Identity, Identity & Beyond.

Originally posted on Barefoot Baroness February 10, 2011.
 
 
 
 
 
 

I was reading another blog, a very different kind of blog than I have been accustomed to coming across.  one of his posts got my mind a buzzing “My glamorous, More Interesting Clinical Identity”

This post  stayed with me even once I had moved on to other things. I could not shake the thoughts that were flooding my mind and connecting with that he spoke of.  For days, and now into a few weeks I have not been able to shake the thoughts this post provoked. But in different way.

Before I continue any further let me give you the link to my point of reference below:

http://eitheory.com/2012/01/11/my-glamorous-more-interesting-clinical-identity/

This incredible anecdotal clinical session brings to the fore front of my mind that although my circumstances are different ( are not they all?) I am different from his client that he speaks of here. But I get it. I see it. Give some people a way to define themselves when they have discovered little else about themselves and a new creature is born.
Albeit Dr Micheal’s post refers to Mental Illness  in this case I still get it. I am relating his post to physical illnesses. I think the two can mirror one another so for me I am allowing this article speak to me in this way.  Body & mind. So I could not shake what I’d read. It stayed with me even long after closing the lid to my laptop. As I said weeks later its still with me.

Having been (and currently still am) a member of the Doctor’s Appointment Club for the vast part of 28 years and participating in support groups of many forms naturally I come across others who like me live with a chronic illness. I hear them talk amongst themselves, including this lady with hair to her hips,  and skirts to her bare feet. While the book is in front of me open to page ?? my mind wanders as I listen to their vivid descriptions of themselves in this doctor‘s waiting lobby. Descriptions of their pain, their fatigue,  their husband and families, theirs UN-acceptance of the intrusion in their lives, their whatsoever…. I wondered if this the only way they see themselves.
Maybe I should not hide it  from others when I am in severe pain, maybe when my symptoms are up to no good I should be sharing this with all to hear.  Allowing myself to be part of my outside social circle when I hurt so much concentrating and focusing on a conversation is not possible. Hmmmm??… I think not. I think that I am far more “Emotionally Intelligent“. And I know that I am much more than an illness that has invaded my body. Uninvited.
I am not my illness. Yes I am not always well, I have a chronic illnesses, I have chronic pain and fatigue. I get it. My family gets it. My close friends get it. These people are more important to me than me being ill. I hate that my symptoms affect them. But they get it. And they get I am doing all that I can to manage my life despite having this illness that happens to disrupt my life on a regular basis. It is, what it is ,and nothing more.
I need not address or announce to others that my body bares the scars of past surgeries that have left me often fighting for some sense of comfort. Feeling pain anywhere on a scale of 0 to 10 (0 being no pain, 10 being the worst) everyday of your life is having to re-learn how to navigate your life through the sometimes wild seas of everything else that comes along with being in pain everyday. But should I wear some kind of badge? Some kind of “Comes with Warnings” label? Would you know walking past me in the street?  No, No, & No!

I do know when we do not have all the answers it can be tough on loved ones. For that I am sorry. I wish for them to find ways to manage their own thoughts and feelings on this matter. But I am wise enough to know that this is their own baggage, if you will. Not mine.
This has nothing to do with being right or wrong. My reluctance to share or display my symptoms to those who have no need to be in the know is spot on. For me. I am not comfortable with people seeing or even knowing about the times I am down because I am unable to cope or manage well. Sometimes chronic pain levels take me to a dark quiet room where I alone without any distractions can get a hold again of my pain cycle. Through much alternative therapies such as imagery, meditation, yoga, relaxation techniques, to name a few help me get grounded again. Sometimes I am not able to get a hold of the cycle as fast as others, yet I have learned to not beat myself up for this and to continue instead and follow the processes that I trust will work. And if that all fails I turn to prescription meds.  But this is really a very private time. This is not how I want others in my life to see me. This is not at all how I want to be known. This IS NOT MY IDENTITY!

This is not who I am!

I am so much more than a diagnosis in a chart. Even those who are part of my team that help me manage my illness can see beyond the medical jargon and look me in the eye. I refuse to be placed or even to place myself into a category of any kind. I have never liked “labels” and I am not starting now.

Defining one’s self by any one or two things can be dangerous. Being labeled, or labeling yourself can be an emotional suicide. Seriously. If I should start thinking and referring to myself in terms of just my medical diagnosis I’d be in trouble. How on earth could I see anything else beyond?

I have too much to do, too much life to finish on this planet. I refuse to waste one more breath than needed on the illnesses I have. They are there. Okay I get it. I can not ignore the many faucets of my symptoms.  But I react in a much different way today than I did some 28 years ago. I know now that to have a knee jerk reaction to a flare-up will be my undoing. I make things worse. Calmly and with great spirit I know what to do and I do not over react. In a matter of hours, days, or weeks I will be okay. Even if my days are not as “perky” as I would prefer them to be I am grateful to have the wisdom and learned methods of coping with flare-ups now. They are part of my life, but they are not my life. They are not me. I am not my disease.

I get that it’s easy and sometimes maybe even comfortable to define yourself by what your mind and body may have manifested. But this is just all part of life, is it not? This is all part of living and after having looked at the alternative long ago of not living when I first began this journey of chronic illness I’ve decided it’s so worth it. This life of mine will be final one day, yet in the mean time I plan on creating so many others ways to be defined by. Anything else but an illness.

I am a woman of means. Many means. A woman who loves fiercely & hard, who cherishes life’s precious moments for what they are, lives for this generous moment and stays mindful of only the now. This is how I would like to be defined. This is just part of who I am. This is how I choose to identify myself. When I meet a new friend I do not shake their hand and say, “hello, I am Illness, I am in pain”.

How absurd!

This one little Ole post from Dr Michael really got my mind a buzz with his topic. Like I said above, he was referring to Mental Health but I so believe in body, mind & spirit are connected, not separate from themselves.  I know this theory works both ways. So I am sure he will not mind that I twisted his post to fit my thoughts, that his words provoked, and his clinical antidote to fit a physical health. It’s all relative after all, yes?

I am a grateful woman who has a chronic illness & diseased spine. So be it. What one of us who has lived 5 plus decades does not have something a miss? I am grateful for my illness and the pain I have encountered for 28 years as it has taught me so much about myself, about this world I call community that I live in, and live with. I am most grateful for how in tune I was forced to become about my body. I am grateful for the spiritual wisdom that I have garnered through-out the years in finding ways to cope. I am no different from anyone else and for that I too am grateful.
I am a woman of substance.  I am passionate. I love fiercely and I wish for all those in my world to be content and happy. I am not my illness!

Nor will I ever choose to be.

©tjtaylor 2011

Advertisements

Looking Back

 { Note: This piece was submitted and used by the American Pain Foundation in February 2011.}
 Since October, 2011 my pain specialist has come to terms in helping me to find treatments that help, not just mask the pain symptoms. Whether it be an increase in medication, new medications, or other procedures to minimize my symptoms, she stepped up the plate.
Finally. It took an entire year of fighting, an entire year out of my life spent fighting the fight of living with chronic pain. Again.
Below please find the piece submitted to APF and know that those days were so dark, and today are so much brighter & lighter
The point?  Keep Fighting!
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

 After living daily in pain for over 26 yrs and having at one time it managed well I am now back into the constant fight again.

I was coping so well my pain doctor referred to me as her “poster child.“  First time in over 26 years I had not been on mega doses of pain medications.
I had agreed to try a medication vacation to see where I was at trusting that my doctor knows I am experienced by now in what works best for me.

After changing medications, adding some new ones,  I was doing great. I had dropped my pain medication vastly, and that was just in the morning to kick-start this crumbling body.
Even though my pain doctor is my pain specialist, someone I can turn to help manage chronic pain, her duty first to me is to cause no harm.  – But this time her inaction she did hurt me.
In 2010 I decided since I was doing so well for over a year to take a long desired road trip.  A vacation I had not been able to have prior because of my health.
The weeks vacation was awesome but soon became clouded on my return home with a flare-up of FMS symptoms along with cervical and thoracic  issues in my spine  My pain level exasperated up to where I have no control  over it again.
This was back in October 2010.  I am still (2011) in a flare, and apparently because my doctor has seen me coping well with far less medication she refused to give me an increase.
The point of what I am getting at is this:
It took me being in unbearable pain again; and having a complete melt down because I have no way to cope, until finally I was being taken seriously.  Yet Again.

My body is exhausted from the pain and from lack of sleep. I am done.  This is the only reason I got her attention. Because I was becoming dangerously depressed.
 That is just a sad state of affairs when a physical symptom is left untreated until an emotional or mental one presents itself. Never mind what it does spiritually to ones soul.
I know my body well. I know what works, and I know what is a waste of time and money for me.
After living with this condition and other over lapping conditions that continue to cause intractable pain {for 26 years} I have gained quite a bit of insights into my self.
 I had high hopes I would never struggle again to find a way to continue to function in my all ready compromised life.
I am a valued contribution not only to my family but my community as well. I have been a strong advocate for myself and others concerning living a functional life with chronic illness & pain. I also have been a strong advocate and ally to children who are faced with abusive situations and have no voice.
While I am able to function these two passions take me away from myself, away from the pain, this is a great coping skill to be sure.
I have to be able to focus on something else than pain, so that I will not allow my mind to go anywhere else.  

I believed taking myself down to a more “reasonable” dose of opiates was a good thing for me.
I found that I was doing well and that there seemed to have been a viable reason for me to find out if I could manage to my  lower my medication levels.
.
But it did not take me long to be right back where I was 26 yrs ago when this flare up of symptoms began to mess with me and my life.
  Just in one year to be exact.  I was spiraling out of control again.
 I was not the one in control anymore. The doctors once again had the power over life. Power over what I was able to do, and not able to do. Power over whether I could get out of bed, have a decent and productive day.
Control over whether I could participate in my life.
When I asked if there was a valid and scientific reason for not increasing my medication until I could once again get back in my saddle I was first told no.  Without any reasonable explanation.
Have I said how much I resent asked questions not being responded t? Always makes me suspect why.
It took a complete major increase in my pain level and the vicious circle of spiraling intense pain and all the emotional and mental impact to have any real sincere attention being finally attended to. And in the end the treatment modality was just what I had asked for in the beginning. 
I agreed to try the medication vacation to see where I was at concerning any changes that may have been being masked by the medications.
I am experienced by now in what works best for me. I never expected to be denied an increase if my pain warranted it. If I say I need more help in minimizing my pain I am not playing around. It’s an honest and sincere request.
After changing meds I was doing great.
But now because of an increase in pain and symptoms I need more help. More medication help. I have always been compliant with the other treatments prescribed. I also use other coping skills and tools I have created and learned over the years.
None of these are helping at all. Not touching it. I am not sleeping, not eating, not functioning again. I have fallen out of my saddle, so to speak.
My big quandary along with the pain that is making my life unbearable again is why?
Why, if in the past 26 years this particular medication treatment was best at having an effect on the pain,  but without all the side effects…why not give it to me again?
Why let me go through 12 months of more increased pain when there is something that can help minimize it before it got out of control?  Chronic pain does that, become out of control if not treated adequately and promptly. If treated immediately and with adequate dosage the pain does not need to turn into the vicious, spiraling out of control circle. The squirrel cage effect is what I call it.  
We as people living in pain everyday should never have to be left to have our pain levels sky-rocket out of control.  We know, even if the medical community doesn’t how hard it is to gain back control and once again be able to cope. I know the medical community knows, but they have their own agenda’s that come first.  They are putting themselves and their practice first.  I’m not sure I feel this is appropriate,  but I am not a physician.  I wonder though how physicians who are in chronic pain whether from a terminal disease, chronic illness, or an injury manage their own pain.  

We know how destructive this is to our bodies, our lives and even for our families. But I am doubting that physicians get this. That they are unable to look beyond their own noses.
Why doesn’t the medical communities know this?
Or do they?
But are they far too consumed with protecting their practices from patient’s like me?  Someone who has never abused the trust given to me in the first place, or the trust I tended carefully to earn. A trust that my life depends on.
My regret is that I have allowed someone once again to have this much control and power over what my body is doing.
After living daily in pain and having at one time it managed well I frustrated beyond that I am back into the constant fight again.
I  do not have the strength to fight this good fight anymore.
I am so done~
 

Sandman Don’t Fail Me Now.

Mr. Sandman; please don’t fail me now.

Needing Some Caffiene.

Who Slept?

Wide awake, in the middle of the night, in the early morning. Again.

I have had an insomnia issue related to an illnesses I have. Having chronic pain being a huge part of my life does not bode well for sleep either. So I am never sure which it is, or is it a combo of the two causing me to not sleep?

Or is it the lack of a visit from the Sandman himself?

I get a tease now and then and sleep for several days, even weeks in a row, albeit only 2 -4 hours per night, but so much better than -0- hours. 

If I am lucky.

I am tired all the time, part of this is due to the illnesses I have. But not sleeping leaves me feeling irritable, frustrated, and even sad sometimes. Why on some nights is sleep not elusive at all?  Other nights, most often, sleep eludes me for most of the night, if not all the night.

I need to have a consistent sleep pattern. Why does the Sandman seem to skip me in  his rounds? There is no answer, may never be one.

Is it just enough that I recognize that this is who I am? 

Is it enough that I know?

I  spend my nights spinning my wheels wondering.

{ above image  by; Jensdigi Stamps 2011)

toni signature-2013

Fibromya;lgia Awareness Day 2013

 

If you are running an event, please email me at fib
romodem@fibromodem
.com
so I can add it to this
list.
The 12th May is National Chronic Fatigue Syndrome/Myalgic Encephalopathy/ Fibromyalgia Awareness Day.
International ME/CFS & F
ibromyalgia Awareness Day Fundraiser
Grasslot WMC, Maryport
, Cumbria, UK
.
Doors Open 12.30pm. Entry £5.00
Live Music from
: Black Wolf Run, Skinwalker, MT Arms, 13 Stars, Brightside, Swift, No Idea,
Stormcrowe, Just Steve, Gypsy
Run by:
West Cumbria ME/CFS & Fibromyalgia Support Group
Sponsored Pyjama Day for CFS/ME/FM Awareness
P
articipants (ill or well)
get sponsored to
wear their PJ’s from 9am
9pm
.
All money raised will go to
which is the leading charity in the UK for awareness about and funding for ME.
Pageant For a Purpose:
Fibromyalgia Awareness
450 Capitol Avenue, Atlanta, GA 30312
Registration starts at 10:30 a.m.
Doors open at 11:45 a.m. for spectators
Contestants
who sign up will raise money for the cause. A portion of
the monies will be donated to a charity rela
ted to Fibromyalgia. The
contestant who raises the MOST money will receive a SUPREME
TITLE!
See
Pageant Rules
.

If you are running an event, please email me at fib
romodem@fibromodem
.com
so I can add it to this
list.
THUNDERCLAP
Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal
number,
on the goal date,
Thunderclap will share the same message on EVERY supporters’ Twitter
and/or Facebook page at the same time!
1.
To support the THUNDERCLAP personally, click
the link
then you can:
add more social reach
with Twitter or Facebook; and/or
promote the THUNDERCLAP by sharing or tweeting.
2.
You can promote it on your Facebook page
3.
You can write a blog post to let all your followers know about the project.
May 2013 Awareness Campaign
For the entire month of May, upload your
VISIBLE Army
photo
to your FaceBook page and/or Twitter
profile.

 

 

So Not An Apology in My Mind…..

 It’s important that I preface the below letter with some brief information. As included in prior pages and posts on this blog I have shared that I am a victim of a medical implant disaster. That history of my experience as well as the history of The Vitek Proplast Teflon Jaw Implants are included here in this blog. The Vitek Proplast Teflon Jaw Implants that were finally recalled in 1990 is also contained in this blog.

The letter below is from the man who invented these implants. The first cruel irony in this letter is that Mr Homsey calls himself a victim.

Hmmm.. let me see, he makes millions from the sale of implants that have destroyed thousands of people’s lives in the USA alone. He files personal and business bankruptcy and flees the USA, only to try to sell the same implants in other countries. The World Health Organization quickly put a stop to these sales after urging from implants victims here in the USA.

But Mr Homsey says he is the victim.

He blames the FDA. Well at least we agree on one entity who we are also blaming. But for far different reasons. In my participation in a class action torte case our legal counsel and our investigators uncovered many inappropriate actions on many levels throughout the medical device approval process. To say fraud was committed is an understatement.

To say that negligence was attached would also be a gross understatement.

From Dr Charles Homsey. No apology here folks!

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

The FDA’s Victims

by Charles Homsey

*Personal responses by Toni Taylor-Helser  (Ghost writer Barefoot Baroness) . My opinions are  from my experience only

This article appeared on cato.org on September 8, 2001

The Food and Drug Administration, the federal agency that is supposed to certify the safety and efficacy of pharmaceutical products and medical devices, often drives excellent products off the market. I should know. I was a manufacturer of medical devices and a victim — – along with patients deprived of those devices — – of a FDA vendetta.

I wish like millions of others that we had been deprived these implants.

In the 1960s I invented the material Proplast that the FDA itself approved for use in implants for patients with distorted, damaged or destroyed facial structures, jaw joints, thumbs, hips and other body parts. My company, the Houston-based Vitek, manufactured 30 different Proplast implants that were used successfully in some 100,000 patients, successes documented in more than 125 peer-reviewed publications.

One particular jaw implant was provisionally approved by the FDA in 1983. In 1986 I heard reports about some of these implants wearing out. I convened a conference of surgeons who, in a report to the FDA and the oral surgeons’ national association, found fault not with the implants themselves but, rather, with the way some surgeons used them or with the refusal of some patients to follow their treatment plans. But to be on the safe side I stopped promoting the product.

This is categorically untrue that he first heard about the failure of the implants in 1986. My legal documents hold correspondence between Dr Homsey and other participating doctors and medical and educational agencies that date back before 1986. The same year ironically my implants were surgically placed. .

Here Homsey again has no sensitivity for the patients he harmed. He speaks of patients not following their treatment plans. This means we ate, we talked, we swallowed, and we tried to brush our teeth. And this was for me even 5 years post-op that I could not do these things.  I could not open my mouth any wider than to put a straw in mouth, chewing was impossible.I was on a liquid soft diet for more years than I remember. My smile was crooked,  I had a severe Mal-occlusion.  I spent a year going to a pain clinic 3 times a week, and saw every type of doctor and every physical therapy available. In 1990 when the FDA recalled the implants my oral medicine doctor and my surgeon would see that my implants had completely fragmented, the exact reason the FDA recalled these implants. I had bone on bone and severe bone deterioration from the implants.

There was the toxic materials that my body cannot absorb and eliminate. Creating what is called a Giant Cell Reaction. Dr Homsey  fails to mention here that in 1990 the FDA recalled his implants, obviously the FDA did  find fault with the implants. And please note the date of this letter above.

Dr. Charles A. Homsy, a medical device inventor for nearly four decades, was founder and CEO of both Vitek Inc. and Novamed Inc. He is the author of the recently published Cato Policy Analysis, “How FDA Regulation and Injury Litigation Cripple the Medical Device Industry.”

The FDA was clearing up an approval process mess for medical devices and the litigation he speaks of is my litigation, the class action lawsuit I was part of.

Predatory trial lawyers then got into the act, filing suits over the device against Vitek as well as any company or institute that had anything to do with the device. Most of the lawsuits were summarily dismissed or won by the defendants. But the cost of defense to the Du Pont Company, which supplied Teflon ingredients, was $50 million, and to the hospital where I had invented Proplast, $30 million. In order to continue to obtain liability insurance, I founded a second company, Novamed, to continue to produce safe Proplast implants that had no record of problems.

And there were so many VICTIMS that had legal standing the actual damages awarded to each was far less than even $50,000. Yet many of us have become permanently disabled, in the prime of our careers have no earning power to this day. Lost homes, marriages, and so much more that no amount of monetary damages would ever compensate for.

But the FDA took its lead from the trial lawyers — indeed, it was a source to them of misinformation about the jaw implant — and turned its legal guns on Novamed and on its FDA-approved products. In various complaints that agency aimed the erroneous charges that had been made against the jaw implant at products about which there were no complaints or investigations whatsoever.

This is why we received monetary damages from his company’s Vitek’s bankruptcy proceedings. (But only after his other creditors were paid. first)

These mistakes were pointed out but the FDA persisted in its persecution. Investigation if you do not mind!  Eventually it seized the entire stock of FDA-approved Proplast products, and a series of court reversals and re-reversals of that seizure finally forced me in 1992 to shut down Novamed and to team up with a Swiss company to make Proplast products in Europe.

Remember the FDA recalled the implants in 1990. After he moved his business to Switzerland the World Health Organization stopped him from marketing these implants to other country’s as well.And stopped him from marketing them in 3rd world countries.

But the FDA continued its persecution overseas. It posted the erroneous warnings it had made against the jaw implants against all Proplast products through the World Health Organization. It blocked export from the United States of hip implants needed for technical evaluation and testing. Still, Canada, Australia, and the EU granted approval for shipments of all Proplast products from Switzerland. Further, when the Swiss company sought approval to export those products to the United States, where they were still legal, and the FDA’s own Office of Science and Technology found no problems with the implants, the FDA dragged its heels. The years of costly delays and battles took their toll; the Swiss company declared bankruptcy in 1999.

There are too many untruths here as well to even point out.

Who has been harmed by the actions of out-of-control bureaucrats and trial lawyers? Surgeons continue to request Proplast implants and try to secure them for their patients.Name one in the US! There is good reason. In many cases adequate alternatives are not available. Many surgeons have returned to the old, more painful, and invasive procedure for jaw joint replacement involving transfer of a rib bone.And what about cartilage from the back of the patients own ear?  Further, to avoid lawsuits or FDA vendettas, many producers of materials required by implant makers discontinued all sales to the implant industry after 1993. The bottom line: The patients are the ultimate victims. The FDA is not protecting their safety but, rather, increasing their torment. And living with Giant Cell Response and a failing auto-immune system is not torment?

There are adequate replacements, a graph from your own body such as I had done in 1992 my own issue. Or from a graph from cadavers.

More untruths!

The Europeans have a better way to approve medical devices. Their governments set out specific, objective, quality and safety standards, but then certify private firms to determine compliance to these standards. Manufacturers are allowed to select the company to certify them. The existence of competing companies makes it almost impossible for FDA-type abuses to occur.

This too me sounds crazier than what our own FDA now does after completely overhauling the approval process for medical devises. Granted I do not know this system but will say that I am certain Homsey likes the idea that he could choose the company which would certify his products.

The FDA has driven many manufacturers and safe products that relieve pain and suffering from the market. Policy makers wishing to deal with a true health care crisis should stop the damage done by this federal agency.

Driven products out that should never have been approved of in the first place. I carry with myself daily the damage the FDA allowed Dr Homsey to cause.

©tjhelser2012

The Proplat Implants ~ A Physcians Summary

Teflon-Proplast Implants

by Keith Webster


One of our many correspondents wrote about problems after a Teflon TMJ Implant:
” I had a Teflon implant removed from my TMJ joints in 1987 which had been implanted in 1984. At the time there seemed to be no negative reaction although the surgical report stated foreign body reaction had been observed. Unfortunately I was involved in a car accident complications from which affected the TMJ requiring grafting of rib material to reconstruct the jaw.

My question is: Are there any tests to see if the teflon residue can be detected in either the tissue removed in the later surgery or even now post surgically (there seem to be some complications in the right joint).”

A TMJ implant, which was made out of a Teflon-Proplast material and used as a meniscus replacement. With hindsight severe degenerative changes occurred in about 90% of cases.

The implant disintegrated under load, producing a foreign body giant cell reaction , subsequent bone erosion and lymphadenopathy. [disease of the lymph nodes]

Vitek withdrew the implant and went into liquidation. The U.S. Food and Drug administration subsequently produced a consensus statement advising the removal of all symptomatic implants and 6 monthly radiographic follow-up of asymptomatic patients.

A foreign body reaction is seen after any implantation of any alloplastic material and is a chronic inflammatory response. (Also called Giant Cell Response) However if the response is low-grade and produces no symptoms then no action is necessary. There are analogies here with the similar response to reactions to implantable silicone breast implants.

Unfortunately the search for a biocompatible TMJ implant has not produced any serious contenders and in the UK and USA.  Most TMJ reconstructions are performed with auto-grafts of cartilage capped rib (costochondral grafts) or new menisci are formed by using interpositional muscle or dermal grafts. The main prosthetic TMJ under consideration in the UK and USA is the Christensen prosthesis composed of a cobalt-chrome articular fossa and a methyl methacrylate condyle replacement attached to a cobalt chrome ascending ramus. However there appear to be no long-term solutions to the multiply operated patient and only about 5% of all patients treated for TMJ disorders undergo open TMJ surgery.


References:

US Food and Drug Administration: FDA Safety Alert. Rockville, MD, US Food and Drug Administration Dec. 28 1990

Kaplan PA, Tu HK, Williams SM. Erosive arthritis of the temporomandibular joint caused by Teflon-Proplast implants: Plain film features. Am J Roentgenol 1988; 151: 337-340

Dolwick MF, Dimitroulis G. Is there a role for temporomandibular joint surgery? Br J Oral Maxillofac Surg 1994; 32: 307-313.


“To answer the question whether tests could detect traces of Teflon, yes, a biopsy of the joint area might show microscopic bits of Teflon. However, it is not clear what the results could mean. It would be quite difficult to remove all particles of Teflon when removing an implant. Many patients who have had Teflon implants removed are now showing signs of foreign body reaction, and traces of Teflon surely remain. Teflon implants are used successfully in other parts of the body – in places not subjected to heavy stress – indicating that Teflon itself may not be harmful.

In general, patients who undergo TMJ surgery are rarely pain-free and seldom experience a complete resolution of TMJ symptoms. They usually have some continued complications. Armed with this knowledge, patients with mild or minimal TMJ symptoms can avoid wasting time and money seeking a medical ‘cure’ which probably does not exist. Instead, concentrate on changing behavior patterns or bad habits like bruxing, clenching, chewing gum, etc.

Teflon-coated TMJ implants were manufactured exclusively by the Vitek Corporation beginning in 1973 until the company folded about 1993. The U.S. Public Health Service sent warning letters to 20,000 people who received Vitek implants. Symptoms of TMJ implant breakdown include;

  • pain radiating from around the ear
  • limited lower jaw movement
  • joint noise
  • change in occlusion (bite)
  • difficulty chewing
  • headaches

Concerned patients in the US may call Medic Alert, a non-profit foundation, telephone 800-554-5297, for further information about where to find TMJ support groups. The U.S. Food & Drug Administration has information about TMJ implants, telephone 301-443-4190 or 301-443-3170.”

Submitted by Robert B. Stevenson, DDS, MS
Columbus, Ohio
gold2ooth@aol.com

Further contributions on this subject are invited.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Barefoot Baroness aka Toni Taylor-Helser as an implant survivor says: 

If you are reading this because you have been diagnosed (d/x) with TMJ disease and/or received TM Jaw Implants please feel free to contact me with any questions or comments.

If I had to do it over again and I had the hindsight of information that today I carry, I WOULD NOT HAVE SURGERY with man-made foreign material implants. IF, and I say if you have bone on bone in the joint(s) than a surgical reconstruction of the disintegrated cartilage should be considered to repair so to alleviate pain and bone erosion.  But thex only way I would go in to it today would  be  armed with the knowledge I have now somehow and that is with only an auto-graft. What I HAVE  NOW. Harvested from somewhere else on your body (mine is  cartilage from the backs of my ears & hips in my second surgery). If you do not have any degeneration of the joint and a doctor is recommending surgery I would run as fast I could to the closest exit. If a doctor is diagnosing you with such demand the films, take them with you to a second opinion.

Today after over 30 years of research and study concerning TMJ disease and talking with other people afflicted the popular treatment modality today is wait it out. There are many things that can be mastered to help cope and alleviate the pain and spasms.

Please just don’t be ready to jump when surgery is offered. I know how tempting the promise of no pain can be. But it is never NO More Pain. It can make things much worse even though today the implants that have caused so much destruction are no longer marketed there is still a risk with any surgery. And there are still medical implants being used every day. They are also being recalled by the FDA every day. Not much has changed.in 30 yrs.

Again, Thank you so much for your time, and your attention.

On Chronically & Being A Gal Pal

My 2013 wish for all those women in my world of living with a chronic illness ( no offense guys )

This is pure fun for the simple sake of just being fun, Nothing else. Oh wait! Yes there id another reason, the main point; To find a way to thrive in spite of being chronically ill.

Living daily with an illness that is present with its symptoms on a chronic level can be so damaging to a persons emotional well-being in many ways. Male or Female.  Albeit this post certainly speaks to women alone.  I’d like to add that men need the same kind of outlets & expression that I am referring to here.  Just having fun and thriving anyway despite some of the complex treatment modalities or changes in life style needed to cope.  Important aspects needing nurtured in all of us

This song by country artist, Shania Twain who was new to me before this song was pointed out  fits the message wanting to be conveyed in a fun & silly way.  I thought it important to start 2013 on an upbeat note. Or several notes as the case may be.

This tune says that it is a “women’s prerogative to have a little fun feeling like a woman, Now I am talking all things girly here Girls.  Like going out for an evening with your favorite gal pals, doing pedicures together, shopping, whatever it is you & your gal pal’s love to do that remind you of your feminine side. And your friendship. All very conducive to thriving with a chronic illness of any kind. Conducive to living period but women living with a chronic illness that involves pain & fatigue tend to put this need at the bottom of their priority list.

Live for the moment of joy in life that you set out purposefully  to grab. It matters little what the activity is, it is the act of doing something for your own self that in turn lets you feel good about yourself and your actions.

So gal pal’s of mine Let your hair down, shake it all loose, and  kick  those shoes off…and party. Happy New Years!!

See link below for information on how to ask for music requests & challenges

http://geetoni.wordpress.com/2012/11/15/now-taking-your-requests-2/

fibro directory

peace6badge

Fibromyalgia Knowledge Community Directory

peace banner

fibro directory

How wonderful to be included in such an informative and valuable directory. I am humbled by being asked to have FullCircledMe included. If you have not found the directory please check it out. No matter what you might be living in life even if you are blessed to not be inflicted with any chronic illness there is great benefit from this directory.

fibromodem.wordpress.com/fck-directory/for-bloggers/

I am grateful to be  connected.

Just click on the link

http://geetoni.wordpress.com/2012/11/15/now-taking-your-requests-2/

In Honor Of Vic ~ Life Lessons

Today I doing something I very rarely do. Using someone’s else post and their words. There is a distinct point I want to make and have asked a Dear Friend if I could re-post her own of this amazing piece.

My friend Tersia’s adult daughter Vic is  dying. She has been terminally ill for so long her mother remembers little else lately in terms of their lives.  Now Vic is multi-organ failure which Tersia is aware there is no return from. Tersia, and her daughter Vic’s  life story is a compelling one for me. They are  a family in crisis that that I am unable to turn away from. I feel a kinship to Tersia that I have not found with anyone else despite having developed close and kind  friendships, even here with some of you. This is so very different.

I have been wanting to write something in honor of Vic for some time. As it turns out i need to honor both Vic and her mom Tersia.

I have come to realize that we as a nation in my country, The USA  we do not speak about death openly. I don’t now what other countries cultures are. I have discovered and thankfully not too late it is imperative to be able talk openly about death just as we do life. It does not even necessarily matter what is said, it is that you are talking about it together. Should you need some idea how to start a discussion with the ones you love I urge you to visit Tersia’s blog.

Some of you may know that in April of 2010 I almost lost my youngest child to a  hemorrhage on her brain. A stroke. She was 34 at the time. She went under emergency brain surgery and was put in an induced coma for 3 days,  Not knowing what the end result would be I had to put her life in God‘s hands. Not an easy thing for a mother to do no matter how strong your faith. .After meeting Tersia and coming to know Vic’s life story I have become connected to this family in a way I cannot explain to anyone but know its is connected to our daughters.. I don’t even try to explain it, Tersia just accepts me.

This post is about the unconditional love between a Mother & Daughter and the lessons in the wise words posted  below by Michael Jospephson from Teresis’s blog. I cannot imagine what my friend is going through, and thankfully I don’t have to because she shares openly and lovingly on her blog. I do know she is a hero of mine for various reasons and I know that it is because of her that her beloved daughter Vic is being allowed to die with the grace and dignity that this very courageous woman deserves to be honored by. They are two of the bravest selfless people I know.  They both have taught me how important it is to live each day mindful of only the “Now”

I also know that I  hope to live my life and my daughter live hers in the light that Tersia and Vic hold out for still today. I share Tersia’s blog with my daughter and we talk about living for things that matter.  Vic was just recently planning a trip to Italy for next year with her mom. That’s love people. Things that really matter. And both Tersia and her daughter Vic know what those are and how to live just today. Just for the now.

I would ask that you visit Tersia’s blog  to just say hello and send them your prayer”s and thoughts today.  They are in mine.

In Honor of You Vic

My beautiful baby girl

Vic, Tersia’s Beautiful sleeping Daughter  (also posted with permission)

From The Blog Of:

tersiaburger (click here )

Vic’s final journey is about my daughter’s battle with life and death. Vic is terminally ill.

Post Titled:

What Will Matter – Michael Josephson

Ready or not, someday it will all come to an end.

There will be no more sunrises, no minutes, hours or days.
All things you collected, whether treasured or forgotten, will pass to someone else.
 
Your wealth, fame and temporal power will shrivel to irrelevance.
Your grudges, resentments, frustrations and jealousies will finally disappear.
So too your hopes, ambitions, plans, and to-do lists will expire.
 
The wins and losses that once seemed so important will fade away.
It won’t matter where you came from, or on what side of the tracks you lived, at the end.
 
It won’t matter whether you where beautiful or brilliant.
Even your gender and skin colour will be irrelevant.
 
So what will matter? How will the value of your days be measured?
 
What will matter is not what you bought, but what you built;
Not what you got, but how you gave.
 
What will matter is not your success, but your significance.
What will matter is not what you learned, but what you taught.
 
What will matter is every act of integrity, compassion, courage or sacrifice that enriched, empowered or encouraged others to emulate your example.
 
What will matter is not your competence, but your character.
What will matter is not how many people you knew, but how many will feel a lasting loss when you’re gone.
 
What will matter are not your memories, but the memories that live in those who loved you.
What will matter is how long you will be remembered, by whom and for what.
 
Living a life that matters doesn’t happen by accident.
It’s not a matter of circumstance but of choice.
 
Choose to live a life that matters.
What Will Matter – Michael Josephson
 
Tersia, & Vic  thank you my dear and clear friend’s  for allowing me to do this. you both softly touched my soul~ BB
 

Full Circle Tribute Song

Unbelievable!  The universe and all those in it keep right on surprising me still today.

I have had the title  FullCirceledMe and the concept for a book since I was 18 yrs old,  albeit the material changed a bit over the ensuing years. I have been writing for (2) two yrs almost solid on this story  and (1 ) one year on this blog with a version of the same  title. Finding a song called Full Circle feels like  finding a part of My FullCircledMe Life itself,  I could not let it pass by me without  a documented thought. This title, and now amazingly this song are joined by my heart,  finding ways to tell my Full Circle journey with honor and authenticity.

The reason for today’s post here at FullCircledMe is about a song  called “Full Circle”By the band The Outlaws. I have known the band to some degree but recently was turned back on to them and have been playing their tunes since. I have been thinking of posting this for some time. I am so grateful  for this tune in more ways than it being only a song, Having  found this song felt like my Birth Day. I have a story of myself and the 3  women I grew up with. There are 4 generations of close friends in our respective families. I have known these women for 5o plus years, since our births. Their parents were friends with mine, their daughters friends with my daughters, and now our grand children growing up together. 57 yrs of close friendships that have evolved as we have done so personally. We have become Full Circle in every way that 4 women who have always known one another only can. They have been and are a constant in my life despite having no daily contact since our daughters have lives of their own. We have gone and come Full Circle in our own personal journey’s as well as individually. And we are doing it again..and again.

Finding this song, was the last thought in my mind, and  has left me feeling that it is heaven-sent by a caring and loving universe. How blessed I am.

The song is representative of My Full Circle life. One that has been met with challenges I had not studied for in life and since had to take a running approach to most things that just were so not expected. Life will throw us curves, some not so wonderful. Some astonishing wonderful, I am blessed to have both so I know where the balance is. This is all I am in need of in my Full Circle Life. Balance of all things which speak to me in good ways, and speak to remind me of that which I should detour from. My life has very much felt like  the round about” that are the intersections of my life. Crossing some roads are easier than others but those bumpy unsure paths that are less traveled are the ones where I seem to find my answers. I find it interesting that all good things in life are just a little tougher to find, as if working for the truths is part of the journey. Maybe so.

My wish for anyone who is looking for their own answers, their own truths, that they find a way to come Full Circle in your journey. It’s not about the destination ever… it’s always about the journey..  and how sweet the journey  is.  I am reminded  to look up at the stars and thank the Universe for such fine gifts. …

My Humble thanks to To The guys in the band. ~ The Outlaws”  To add to your own Play list via YouTube for Full Circle

  http://www.youtube.com/watch?v=wKRguIPcqLw&feature=bf_prev&list=PLxUxhT8wSw9Ofp2S81lCvKmTVdKu3mg0m

©tjhelser2012

.

Life Time Changes * Vitek Proplast Implants

Note from me: If you have been a follower of my primary blog Barefoot Baroness you may have seen this a year ago. (2010)

Image result for my story isn't over yet

* LIFE TIME  CHANGES * 

My personal  experience in the world of Chronic Illnesses, Pain, and Fatigue began as a dental procedure in 1984 An oral surgery for 5 hours. The second one for 2.5. The whole time while I was completely sedated unconscious, my mouth and jaws were stretched & lodged open farther than my normal range of motion would allow on its own. I of course did not know that then. I of course did not know that this would begin to create a nightmare in my life.

I was soon to learn some very important life lessons.

About a month later in the middle of deep wonderful sleep, my last, I was startled awake by the worst pounding numbing headache (h/a) of my life. Not that I had much to compare it with as I had no h/a history beyond the occasional pre-menstrual h/a.

Too long of a story so I will cut it much shorter;  I was diagnosed with TMJ (Temporal Mandibular Joint) disease and degenerative joint disease in 1984. The joint cartilage between my upper & lower jaw bones had degenerated completely, bi-laterally.Both jaws.

Hmm…..( remember; no prior history of headaches although the prior history of my limited range of motion should have been a hint to the oral surgeon and dentist that I was vulnerable.

The answer finally (after 2 yrs of unrelenting head, face, ear, neck and shoulder pain!) after two years of eery non-invasive treatment modality that failed was to have surgery to repair the joint and stop the “bone on bone rubbing by implanting a small fashioned piece  of polmer plastic to replace my cartilage that had degenerated away. The implants were made from Teflon & Silastic, Developed and made by a company called Vitek. The implants were called Vitek Proplast Inter-positional Implants. This was in 1986 and the only thing I knew about Teflon was Dupont Teflon pans for preparing meals.  Silastic ?  No idea.

Looking back I have to wonder what was up with my surgeon. He had me come after work the night before my scheduled surgery just for the intention of sedating me to see if once I was unconscious and completely relaxed if my locked jaws would unlock open farther than while I was awake. It’s helpful to know that there was an ongoing blame game pointed to the patients, that we don’t cope with stress well so we tear up our own jaws. Seriously, this is true. I could barely get a straw in my mouth at the time and had been on a liquid soft diet for the better part of two years. 

All I remember about the after work pre-op visit to the surgeons was is talking to him and the syringe with the sedation. The next thing I recall asking was “when is the procedure/test going to be done?” I was impatient. I had things to get done at home before my stay in the hospital which was expected to be 5 to possibly 7 days. The result of this strange test? My jaws would not open any further than when I was awake. Surgeon satisfied.

Again to shorten a long story; the surgery was not a success and for 5 long years I was on the road to destruction. The nightmarish life I had led the two prior years now seemed like day dreams compared to what was now happening to my body and my life. No one had any answers. It was thought and charted by many doctors in patient’s chart’s like mine that the failure of the surgery must have to do with patients non-compliance. Yes, you read that right. We were not talking right, chewing right, even breathing correctly, according to the implant’s makers. Now it was our fault that we could not open our mouths to chew and talk at all. It was something we were doing wrong.. or not doing at all… no one knew really.

Mind you that post-op included intensive physical therapy once recovered and  healed from the surgery. I had PT three times a week which involved everything from neck therapy, mouth stretching exercises to intra-oral massages. Sound like fun?

In 1991 my local newspaper and the FDA did have the answer to why I and thousands of others like me were not getting better, and in some cases like me were worse than before the surgery. Which had never made sense until this announcement was made in the newspaper. In the form of a tiny two-inch paragraph buried in the back pages of my  Sunday newspaper was my answer. Finally!

 

My implants were

 recalled by the

 FDA

In January 1990

Due to an extreme high rate of failures resulting in fragmentation of the implants the FDA recalled the implants right and left in the USA. During research for litigation against the multiple defendants in the implant class action lawsuit it was discovered there was people and documentation stating that the implants were never intended as viable products for humans, knowing there was a very high chance of a complete failure implant wide

The life changes for me and my family had begun…..

Four more years of chronic pain and fatigue that I had been advised the surgery was going to help, when only in the end made matters worse.

After reading about the recall (1990) it was recommended that I have the implants removed. Or what was left of them. Images from x-rays, Tomograms and Panavues showed there was no doubt that my implants had failed, had fragmented. Who knows when they began to fragment.  I had another surgery with a different surgeon to remove the what was left of the implants, but mine had completely fragmented. This fragmentation would have been seen on any films I should have had taken all along but especially when i was reporting being continually symptomatic. But there were no images ordered. Not in four years of steadily becoming more symptomatic.

My complaints from January 1986 post-op until 1990 fell on deaf ears. I was simply handed one prescription after another, hand patted, and told that I must reduce the stress in my life. Seriously?!  I wonder what damage could have been prevented had the x-rays images documented the implant failure earlier when the implants first began fragmenting.

My new doctor tried to debris my TM joints and took cartilage from the back of my ears and bone from my hip for reconstruction of the joints. Why was this not done the first time?  How in the world was man-made materials thought to out perform human body tissue? Especially when it’s your own?  The answer? Greed. Financial greed.

The nightmare gets worse. Autoimmune disease is now part of my life. The Teflon & Silastic are trying to be absorbed by those of us who are still surviving. This isn’t possible so the intruders are causing rejection. A Giant Cell Reaction/Response begins when the immune system finds the intruders ad tries to destroy the uninvited guests. Unfortunately what happens is the immune system cannot tell the difference between the implanted foreign materials and our own tissue so we are under attacked by my own immune system.

Consequently what started out as chronic H/A’s, facial, neck & shoulder pain has now radiated through my whole body. In 1991 I was also diagnosed with Fibromyalgia and Connective Tissue Disease; and the question of Lupus is brought up every year after. Each time I see a new physician they test for Lupus & MS. I show the signs and the symptoms. But( updated 2012) I am happy to be able to state that no Lupus/MS has been added to my long list in my chart notes.

Because of the Giant Cell reaction the degenerative bone disease created  by the TMJ disease issue in the first place continues. In 1997 I had to have all my teeth (what was left of them) removed in another hospital stay. I had been experiencing lose teeth and once the first one fell out, root and all, the process began for all of them. It was both a frightening and humiliating experience. Not to mention being painful. Again with the pain!

Corrective surgery, creating new bone for the dentures to have something to hang on to begin with. The bone loss was so prevalent and severe that my roots and nerves of my teeth had nothing to hang on to. New bone from my hip was grafted and added to build up my jaw bones.

Six months without ANY teeth meant not seeing anyone outside my family. Now the implants were messing around with my dignity and self-respect in ways I did not know how to fight. So I isolated even more. None of this current dental work and oral surgery had any effect on taking the chronic pain away, improving the health of my bones or immune systems. In fact my doctors told me that these newest procedures were being done to remove the unhealthy teeth tissue, and to give me a cosmetic improvement. One that would let me smile. But my dentist was clear so I would understand that the new teeth would not guarantee that I was going to be able to eat with them. My new dentures would give me a comfortable smile again but would do little to correct my jaw health.

How wrong  they were about not being able to eat with my new teeth! The best thing to come out of the entire nightmare.

After the 6 months of healing the day came when I was to receive these new teeth. For someone who had dental problems her whole young life and never would smile when photos were taken, because of the dislike I had for how my natural teeth looked, the new smile was a gift.  My new teeth were just what they had been promised to look like. Better than my natural teeth had looked for as long as I could recall.  My two front top teeth had been created smaller than my two naturals ones which was my inclusion into the design.  I was more than pleased with how they looked than if I could chew with them. I am in no way advocating for dentures. Finally the tide turned for me in this whole mess: I have been one of the very rare and fortunate ones – my  full set dentures that they had said were only for cosmetic purposes and that I’d probably not be able to eat with them are better than I ever expected. I was able to chew better than I had for dozens of years. I was so ecstatic that I could actually chew with them right away. It took a bit of time to learn how to talk ad eat with them but the smiling wide happened immediately.

In 2000 I finally relented to having the neck surgery I had been putting off, only because I could no longer lift my left arm higher than my shoulders. The pain?  It was awful too and I had become couch/bed bound. The pain and the dysfunction of my body mechanics was depressing me, and the chronic every day, every hour,  pain was taking my life’s breath & spirit away..

The surgery was frightening as the thoughts of any surgery are. This surgery involved my doctor wanting to use a Titanium plate (Implant?) to graft between my three blown out discs in my cervical spine. I thought the man was crazy to even suggest it. Especially to me. Did he not read my chart notes thoroughly? I was no way going to put another foreign product inside this body. No thank you very much!

We had a long talk…several long talks…. he filled my arms with research materials and studies,….gave me web sites to do my research.  He took calls from me any time of the day and provided me with his personal email address for those nights when I could not sleep and was up doing research instead. I was on a mission. This type of surgery using the titanium plate ironically is also called the same thing as my jaw surgery. Arthoplasty. Could it get any more scary?

The research and consultations with my surgeon and my internist along with unrelenting pain let my mind make the choice much easier. The lack of use of my left arm helped urge me on even more. I finally decided after much prayer that this was the procedure to be done. That I could put my trust in to the powers, talents and skills that my surgeons gained and let me go forward. The surgery was to be done. I was going to be cut open across my neck. In the front. I was even a bit vain about the possibility of a scar. Me? I am just not a vain person and maybe was looking for any way out. But my surgeon promised me that the incision was to be made inside a natural fold of my skin in my neck. That it would hardly be noticeable. [His hands held steady as he cut and today even 11 years later it’s impossible to see unless you are looking for the scar.]

I had 6 months to stop smoking/ingesting nicotine prior to surgery. Dr David Newell in Seattle Washington refuses to operate on anyone who smokes because of the healing factor. His point was well taken; why go through the process, all the work and skills to repair someone’s spine to then have it all fall apart in a “Hens Basket” because you are not able to heal promptly and adequately due poor circulation caused by smoking. Especially true for spine surgery.

I stopped smoking for my final time 12 yrs ago and in 2000 had the operation, but only after I had exhausted myself with research, and probably my surgeon with questions.
Since then I have been diagnosed also with spinal stenosis, spondyilosis, chronic insomnia, bursitis of both hips, arthritis of my knees, L ankle, right thumb, forefinger, and along with what is now beginning to develop in my left thumb. From bi-lateral jaw surgery to Big toe surgery I am a bionic women with some (wo)man-made parts and some of my own re-purposed.

I cannot change the outcome, or the results of my health issues – no matter what their origins are from. But I can change and manage how I deal and cope with it all. That much control over it I DO have. What I can do and hope to be doing is opening myself to the world so that others may find their way from these particular health problems along with me.

My hopes and desires turn to trying to reach others and find tools and tips that may help us all navigate the long journey into searching for ways to cope,  Finding ways to have a life again, albeit a different one than you knew before.

 ~ Begin first with acceptance ~

 

 

©ttaylor2012

Chronological Implant Aftermath Part Two

THE AFTERMATH

PART TWO

Temporal Mandibular Joint (Jaw Joint)
Chronological Time Line For the Implant Approval & Recall Process.

1992, 6/4 – Congressional Hearings on TMJ implants

June 29 1992 – FDA/CDRH staff met with representatives of AAOMS to discuss patient abandonment, reimbursement issues, and recommendations for patient follow-up and future research efforts. AAOMS agreed to distribute a “TMJ Implant Advisory” to more than 6,000 AAOMS members and to publish the “Advisory” in their Journal.

July 7 1992 – FDA/CDRH staff met with representatives of the Health Insurance Association of America to discuss insurance coverage for TMJ-related disorders.

September 1 1992 – FDA published a proposed regulation classifying the IPI, condylar and fossa prostheses into Class III.

September 18 1992 – FDA published a proposal in the Federal Register to reclassify TMJ Implants and components including interpositional use, from Class II to Class III devices.

1992 Oct – OSOMOP SPAGNOLI/KENT report that of 465 patients with IPI, 86% of implants were still in placeafter an average of 32 months. 92.4% were a-symptomatic, however 249 showed some degree of CONDYLE RESORPTION….PROJECT that 54% may fail.

October 1992 – At FDA’s request, the Medic Alert International Implant Registry established an 800 number for patients and physicians to request information about Vitek TMJ implants and to join a registry.

October 30 1992 – FDA participated in NIDR workshop to develop a surveillance instrument for assessing the frequency, cost, and effects of TMJ surgery in the U.S.

1992 November – AAOMS AAOMS workshop on TMJ implants. “Recommend removal of Teflon/Proplast implant and Affected soft tissues.”

November 28 1992 – “FDA Needs Your Help” was exhibited at the Greater New York Dental Meeting. This exhibit alerted doctors to the need to notify patients with Vitek implants to call Medic Alert and enroll in the registry.

December 2 1992 – FDA notified Dr. Christensen that the Christensen Fossa and Condylal prostheses have pre-Amendment status.

December 7 1992 – FDA Inspection of Dow was requested due to consumer reports of problems associated with the Wilkes design and Silastic sheeting (35 MDR/PRP reports).

December 29 1992 – FDA notified all six TMJ manufacturers that two TMJ devices are pre-Amendments devices, which allows the other four companies to market their devices through the pre-market notification [510(k)] process instead of the more rigorous pre-market approval (PMA) process.

Vitekl Proplast Teflon Silas-tic Implants

1993- FDA sends letters to Dow Corning, The Temporomandibular Research Foundation (Morgan), Osteomed Corporation, Techmedica Incorporated, TiMesh Incorporated, TMJ Implants Incorporated (Christensen).

1993 1/26- ONN DOW CORNING EXITS THE TMJ BUSINESS.

February 11 1993 – The Dental Devices Panel met and reaffirmed FDA’s position to reclassify TMJ implants as Class III devices.

1993 April – JOMS WOLFORD reports revision surgery after Proplast/Teflon failure 88% of 163 joints showed significant Osseous Changes after 2 to 126 months.

April 4 1993 – FDA issued a warning letter to Dow citing the need for the submission of 510 (k)s for the Silastic HP sheeting, Medical Grade Sheeting and Wilkes design. Dow responds that effective March 31 1993, they discontinued marketing all implant-grade silicone.

1993 April 4 – FDA  issued a WARNING LETTER to DOW CORNING citing the need for submission of 510(K)s for the Silastic HP sheeting, Medical Grade Sheeting and Wilkes design. Dow Corning responds that, effective March 31 1993, they DISCONTINUED MARKETING ALL IMPLANT-GRADE SILICONE.

1993 4/26 – ONN Class Action lawsuit filed AGAINST DOW CORNING AND DUPONT ON BEHALF OF BOTH VITEK AND DOW CORNING SILASTIC TMJ RECIPIENTS.

June 9 1993 – FDA notified Dr. Morgan that his TMJ implants have pre-Amendments status.

June 15 1993 – Dow Corning discontinued the marketing of H.P. sheeting, Silastic TMJ implants, and medical grade sheeting and block material.

June 18 1993 – A 510(k) for a TMJ implant was received from Osteomed.

Summer 1993 – FDA’s Office of Compliance authorized “urgent use” of the Techmedica TMJ implant in 12 patients

August 29 1993 – Tracking requirements of the Safe Medical Devices Act became effective. Manufacturers of certain devices, including TMJ implants, must establish tracking systems, which will enable them to promptly locate devices in distribution. Newly marketed devices subject to tracking are also subject to post-market surveillance studies.

1993 Aug 31 – WSJ WSJ article about TMJ patients.

1993 Sept-Oct – Television programming airs coverage regarding Implants: 20/20, American Journal, Current Affair segments aired on ABC TV.

September 10 1993 – FDA learned that Dr. Homsey was attempting to market Proplast TMJ products in Europe and FDA wrote a letter to WHO citing Agency concerns.

October 12 1993 – FDA staff met with representatives of Dow to discuss an increase in the number of problem reports associated with the Wilkes IPI and Silastic sheeting used in TMJ. Dow agreed to send an advisory to its consignees.

October 29 1993 – FDA developed a 510(k) guidance document for manufacturers of TMJ implants advising them how to set up protocols for evaluations of their products. The guidance addressed the length of time required to conduct studies and follow-up of their products.

October 29 1993 – FDA sent letters to Techmedica and Osteomed requesting additional information on their TMJ implants. This resulted in withdrawal of both 510(k)s. FDA would expedite the processing of new applications received.

December 8 1993 – Dow issues letter to consignees regarding Silastic sheeting and the Wilkes IPI.

February 14 1994 – A draft classification regulation to re-propose the fossa and condylar prostheses into Class III was published.

April 17 – 20 1994 – FDA co-sponsored a conference with National Institute of Dental Research entitled, “Management Requirements for a National Implant Data System.” The planning conference served to accelerate the process of producing a unified approach to the study of biological host and implant response performances of various biomaterials and devices in HUMAN CLINICAL USE.

1994 July 15 – FDA sent a “Dear Doctor” letter to all U.S. plastic and reconstructive surgeons, oral surgeons, orthopedic surgeons, and otolaryngologists concerning problems with Proplast TMJ Implants.

1994 September – Remainder of products removed from the market except the grand fathered Christensen and Morgan.

1994, September – FDA FDA revised its “TMJ Implants: A Consumer Information Update.” September 12-13 1994 – FDA sponsored an “International Satellite Workshop on the TMJ and Related Pain Conditions.”

                                                   The Immune Systems Giant Cell Response to the Implant Material

September 14 1994 – FDA sent a letter to Japan, Italy, Switzerland, Canada, Mexico, Australia, New Zealand and the Director General of EC in Belgium to inform regulatory bodies about the Proplast TMJ experience in the U.S and Dr Charles Homsey’s attempt to market the devices.

November 17 1994 – FDA sent a letter to all TMJ implant patients in the Medic Alert International Implant Registry (IIR) informing them that the IIR will no longer continue its operation. FDA will continue to inform the medical and dental community and TMJ resource organizations of any problems related to Vitek TMJ implants.

1994 12/20 – ONN, FDA reclassified TMJ implants as Class III.

December 20 1994 – A final rule to classify the IPI, total joint, fossa, and condylar prostheses into Class III devices was published in the Federal Register.

October 16-17 1995 – FDA participated in the NIH Workshop “Bio- Materials and Medical Implant Science: Present and Future Perspectives.”

1995 4/1 – ONN Claims against Vitek EXCEED 2,200, EXCLUDING ABOUT 500 PATIENTS WHO RECEIVED …$1,000…TOTAL REIMBURSEMENTS.

April 29-May 1, 1996 – NIH convened the Technology Assessment Conference: “Management of Temporomandibular Disorders.”

July 17 1996 – The Anspach Total Temporomandibular Implant (formerly known as the Techmedica Implant, and now distributed through TMJ Concepts) received pre-market notification 510(k) clearance which will require device tracking and post – market surveillance.

August 2 1996 – FDA issued letters stating the agency’s intention to rescind the determinations of substantial equivalence (SE) for nine 510(k)s Proplast devices which are used in loaded situations, (for example in joints).

July 1997 – Bankruptcy Court awards to over 2500 litigants based on point system:  All awards less than $10,000.

July 1997 – Dental Research of National Institutes of Health (NIH) Meeting with funding for research into chronic problems of Alloplastic Disc replacement. FDA approves the marketing of Techmedica Total Joint Prostheses again; the first models to be ready in 1997 (new name is TMJ Concepts)

June 19 1998 – FDA rescinded the determinations of SE for four of the nine 510(k)s and the remaining five are being reviewed.

December 30 1998 – FDA published a final 515(b) regulation in the Federal Register that requires manufacturers of TMJ implants to submit PMAs with data showing the safety and effectiveness of the implants.

HEALTH LEADERS IN CONGRESS INTRODUCE LEGISLATION REVERSING SUPREME COURT’S MEDICAL DEVICE DECISION Legislation will Protect Patients from Dangerous & Defective Devices.

Personal Note from the Baroness:  I have lived through every minute of this timeline.  obviously not always aware of the goings on behind the scenes. Such as what was known prior to my first surgery for the implantation of the Proplast’s. I went through a period of real anger. Anger at my country, anger at my doctors, and anger at myself. I was part of the first class action litigation and received some settlement monies. There is not enough monies that could ever reimburse me for the damages. And that is all that can be reimbursed for. Sure pain is part of the damages, but how much is every day, every hour pain worth?

Vitek the company and the man who owned Dr Charles Homsey who manufactured the implants after final FDA approval filed bankruptcy immediately upon hearing through the medical an d dental community that the implants were failing. he filed both corporate and personal bankruptcy from another country. Switzerland.

The most surreal thing is I am grateful I accepted the settlement monies and did not try to hold out for a trial and more damages awarded. Of which I also signed a confidential clause stating I would not divulge my awards. I filed my Torte suit in 1992, the first offer of settlement came in 1994. The others just as slow if not slower. Had I gone to trial I would still be waiting now.

Why not go to trial? First you and your attorney’s must find a court that will hear a summary motion. In this motion we asked the court to agree with us, the plaintiffs,  we, were in fact damaged by those we were suing. There were many agency’s involved from hospitals, to universities, to private businesses with public stock holders. In the cases against DuPont and Dow Corning amazingly the judge found that we ,the plaintiffs, did not have standing (cause) to sue the two monster companies DuPont & Dow Corning. (makes me very suspicious still today as these two corporations have a big lobbying industry on Capitol Hill.)I was once again grateful I had decided the trial would be too much and took the settlement.

DuPont and Dow Corning Settle With Some Plaintiffs.

The courts however took pity on some of the plaintiffs by offering miniscule settlements if we would just agree to go away. The two Biggies knew that they would no doubt succeed, but the time and money wrapped up in the litigation  and not to mention the media attention inspired them to offer what is known in the litigation industry as nuisance settlements. I promise you it did not even come close to enough to live on for one year for a family of four. I lost my employment and income because i was unable to work which meant I also lost my profit-sharing. I also had to stop going to school to complete my degree, which I had waited to go back to once my children were in school full-time to complete my degree. This was severely a detriment to myself as well as my family.

What was painful to my spirit was that  I could no longer sing like I had all my life.It had become impossible to open my mouth more than 3 cm on my good days because of the damage to my TM joints.  Think holding a note as one example where you need to be able to have full range of motion of the mouth as just one example. Not to mention how this type of disease in the TM joints also affect a persons hearing. Mine was already compromised from live music speakers I did not need anymore help.

these assaults by medical devices are not the first of their kind. Nor will they be the last. I recall in horror what the IUD devices did to so many women of my generation. And now we are dealing with Hip & Knee Joint replacement Implants being recalled.

I just wonder when we will ever learn.

There has to be a better way. This cannot be rocket science, can it?

Please feel free to contact me if you have any questions or comments. And thank you so much for taking the time to become familiar what this business is all about.

http://kennedy. senate.gov/ newsroom/ press_release. cfm?id=86739FE7- B6C1-4C2F- 9BF3-409D6348BED 0

Pain Topic – Steroid Injections; Presenting New Risk?

I am most curious what patients have to say. Have you had an epidural of any kind for spine disease?

I’d love to hear from you. Thus a great debate is happening.. as it should.

 Join in the Discussion.

Steroid Injections Boost Risk of Spine Fractures

Thursday November 1, 2012

Injection

Concerns about the safety of epidural steroid injections skyrocketed recently in the United States due to a multistate fungal meningitis outbreak and numerous deaths among patients injected with contaminated solution from a single pharmacy in New England. Now comes news that persons treated with epidural steroid injections for back pain relief are at increased risk of spinal bone fractures, according to research funded by Henry Ford Health System in Detroit, Michigan.

In a presentation on October 25, 2012 at the annual meeting of the North American Spine Society, researchers described a retrospective study comparing data on 6,000 patients treated for back pain between 2007 and 2010; 3,000 patients received at least one lumbar epidural steroid injection and 3,000 did not receive injection [Mandel and Schilling 2012]. The average age of patients was 66 years and 64% were women.

Using survival analysis statistics, the researchers found that the number of epidural steroid injections patients received were linked to an increased likelihood of spinal bone fracture. With each injection, the risk of fracture increased by 29%.

“For a patient population already at risk for bone fractures, steroid injections carry a greater risk than previously thought and actually pose a hazard to the bone,” said Shlomo Mandel, MD — a Henry Ford orthopedic physician and the study’s lead author — in a press release [here]. He recommends that patients should be warned about the risks of potential fractures and have bone testing before receiving steroid injections.

COMMENTARY: This was a large-scale study, but it represents a retrospective, observational cross-section of patients; so, cause-effect relationships cannot be definitively concluded. Also, the findings were presented at a medical conference and should be considered preliminary until full data are available and undergo peer review prior to official journal publication.

According to the American College of Rheumatology, fractures of bones in the spine are common in patients with osteoporosis, affecting an estimated 750,000 people annually. Half of women and 1 in 6 men over 50 years of age will suffer a fracture related to osteoporosis. So, whether effects of epidural steroids cause the problem, accelerate osteoporosis, or are incidental still needs to be determined.

Mandel points out that other steroid treatments, such as those taken orally or by IV, have long been linked to bone loss. However, epidural steroid injections were thought to have little impact on bones since they are delivered directly to the problem area and believed to have less effect on the rest of the body. This may not be the case, he says, “If epidural steroids are causing fractures, it is probably because the treatment is not localized. The drug may be entering the circulatory system.”

We wrote about safety concerns regarding epidural steroid injections in an UPDATE last January [here], noting that nearly 9-million Americans received these interventional procedures during 2010 alone, and notices of serious adverse effects have prompted regulatory review of the procedures. At that time, an UPDATES reader recommended an excellent article in Practical Pain Management [here], advising that practitioners need to understand and educate their patients regarding the full scope of potential side effects that can occur with epidural steroids.

Regarding other pain conditions: In an UPDATE last April [here], we reported on research finding the either epidural or oral corticosteroids provide only modest and temporary pain relief of sciatica pain. Finally, an excellent article from the Journal of Prolotherapy [PDF here] features an evidence-based discussion of the deleterious effects of intraarticular corticosteroids on joint cartilage.

In a recent New York Times article [here], James P. Rathmell, MD, chief of pain medicine at Massachusetts General Hospital, noted that the U.S. Food and Drug Administration (FDA) is reviewing how to reduce the risk of “catastrophic neurological injuries” from epidural steroid injections. The risk of infection, such as the recent outbreak of meningitis, did not even factor into the review — though it will now, he added. Rathmell is a member of the review panel.

Corticosteroids are not currently FDA-approved for epidural injection. Yet, one focus of the FDA review will be on developing best practices for injection techniques with the aim of reducing risks of injury, according to the NY Times article.

Some practitioners contend the injections can be less risky than opioid analgesics or surgery. Even Rathmell concedes that, “In the right individuals, they are a tremendous help,” and complications occur in only about 1 in 10,000 cases.

Still, according to Laxmaiah Manchikanti, MD — who runs a pain clinic in Paducah, KY, and is chairman of the American Society of Interventional Pain Physicians — “We are doing too many of these, and many of those don’t meet the proper criteria.” He also said in the NY Times article that about 20% of practitioners who perform the procedures are not adequately trained.

While incidence rates of serious complications may be relatively low, increasing numbers of epidural injections may be taking a toll. Manchikanti said his own review of Medicare records found an increase of nearly 160% in the number of injections from 2000 to 2010. The increased use is driven by an aging population, the desperation of patients for pain relief, and the desire of practitioners to help — and there are financial incentives. Medicare and private insurers pay $100 to several hundred dollars for an injection, and there are pain clinics that do almost nothing but injections.

So, there is considerable discussion and evidence in the literature that steroid injections may do more harm than good in many cases, whether the intervention is for back or joint pain. While it seems evident that many patients with pain may be helped by these injections, the benefits may be short-term and potential risks should be considered.

REFERENCE: Mandel SS, Schilling JL. The Incidence of Subsequent Vertebral Body Fractures After Lumbar Epidural Steroid Injection. Paper #48 presented at North American Spine Society (NASS) annual meeting; October 25, 2012; Dallas, Texas.

Don’t Miss Out. Stay Up-to-Date on Pain-Topics UPDATES!         Register [here] to receive a once-weekly e-Notification of new postings.

Print Friendly and PDF

Posted bySB. Leavitt, MA, PhDat10/26/2012 10:31:00 AM

First Award for FullCircledMe~ Thank you!

I need to preface this post with a warning that this becomes very personal. It’s a post I have been struggling with for many hours or more with, and I pray that what I say is not inappropriate. One of the things that has touched me so deeply is the openness and transparency I saw on a special blog today. I want to emulate some of that in my life.

This blog, FullCircledMe has been slow making its way, and I am okay with that. It took me 28, almost 29 years to get to the point where I created a blog about life with chronic pain & fatigue. After 15 yrs of writing, participating and creating different forums and newsletters I decided  I wanted more control over what I could speak to. And one of the things I wanted to speak to is thriving with a chronic illness. I wanted to speak to the power of positiveness as well.  This is a word that holds such great promise. And the holder is the one who decides what those promises are. How empowering that is for someone living with any kind of chronic illness. Imagine how powerful that can be for someone who has a terminal illness. I read about some of that empowerment today

I have been blessed by this award, for this blog that has a special place in my heart. I have been blessed too by meeting this woman who I am honestly blown completely away by. She & Her daughter are what her blog is all about, only it’s so much more. It’s actually the story of her daughters terminal illness. You see Tersia is the woman who awarded this Lovely award to FullCircledMe, and more importantly she  is the mother of her beloved daughter Vic. Her blog is Vic’s story.  I encourage you to visit and read. her @ http://tersiaburger.com/2012/09/28/this-is-vics-journey/comment-page-1Praising   Be prepared to cry. But most importantly also be prepared to be empowered like I was, and walk away magically with a bit of a smile placed in your heart. You might not even realize it is there at first, like The Elusive  Butterfly still in its cocoon; until you start to feel the transformation happening. A slow smile growing in your heart

How meaningful this award comes today. I am humbled completely by it.

Thank you Tersia so very much for thinking of me, and this blog that is obviously so much apart of who I am. This award is its first. My humble thanks.Blessings to you both,  and some laughter, times of just being together.I admire the grace you both have.

From Tersia’s blog”http://tersiaburger.com/2012/09/29/lovely-blog-award/

The Rules for The Lovely Blog Award:

– Thank the person who nominated you and link to them in your post. – Share seven unknown things about yourself. -* Nominate other bloggers and blogs that you like or admire. – Contact the bloggers you nominate to let them know and to link them back to your post.

My 7: For this blog and this post I will do what I usually do not. Make it about pain & fatigue On this last Sunday of September. Chronic Pain Month. Please know that I am adding this type of 7 random things only as  a personal comment about living with chronic pain.& fatigue. This is not about pleas for sympathy.

  1. I live with a dull headache in the back of my head and in my jaws 27/7. I honestly forget sometimes now. But when I get quiet and turn inwards it reminds me I am still alive. Still feeling.
  2. I also have chronic muscle spasms that did start in my face & jaws, my head in 1984, they have now moved down into my neck, shoulders and upper thoracic. I am able with medications and daily yoga stretching to pretty much keep them to a dull roar. That is what I call success.
  3. Chronic fatigue is what I still do not do gracefully. There is a deficit starting out and with insomnia it increases until there are times when the fatigue takes front seat. This effects what I can and cannot do on a daily basis. This has become natural ebb & flow of my body’s own circadian clock but can play havoc with a social life.
  4. I have a collection of ice packs and heating pads at the ready . These are my first two lines of defense. Living with c/pain & fatigue just means being prepared with things that have proven to be winners for you. Ice & heat are that for me.
  5. I also benefit from regular massages. This may be the best thing about living in pain I have a built-in excuse to pay for a massage if need be. My dream would be of course to have a built-in masseuse.
  6. If I am having a sever pain spike you are likely not to see or hear from me much until it calms down. I have never ever been comfortable being around anyone when my pain has spiked to where I am having difficulty coping. It’s in that sense of loss of any control, which I never had in the first place, that I cow down too the pain.  Its my wall. This is when it is too much. This is when I want to be alone usually. I don’t want to even have to talk.  Thankfully,  again I am in a good place now.
  7.  Taking ny daily inventory. Of myself. for Myself. Did I give of myself just even a little bit back? Did I create a positive and toxic free lifestyle for myself today? Was there something I left out, or should  have addressed? Did I tell those ho mean something to me that they in fact do?

I am grateful for the month of September as its held up as Chronic Pain Awareness Month calling attention to the issues that people who live in chronic pain and fatigue have to deal with. What I listed are just some of the physical aspects of my own illness. That is another thing…. C/Pain is subjective and it can be very different from one person to the next, or  it can be the same as the next persons. What it cannot be is something to be taken for granted.

I  see this for myself as having two choices in how I address my lifestyle and living with chronic pain;  I could let those 7 random facts about myself rule my life, make my identity through them. Or I can choose to table what is going on with me when the levels are low enough to let go of,  and focus on anything else but those 7 random things. Focus on anything but myself.

I prefer to grab my life,  grab it, run with it, not to be held down by 7 random facts ever, about anything.

Note from Baroness: “This is my personal story. Not to be confused at all with anyone else who lives in C/Pain & Fatigue, and has a chronic illness. It has taken me close to 30 yrs to achieve this. You should know I had some really hard years too so please do not feel I am being flippant and insensitive to anyone who is struggling to find even a low-level spike –  just to ge st break.  I do know this too. I get it.

I  just want you to know if you are having a hard time to please not give up. I promise it will get better. Not fast enough I know. But it will.

* This is the point I always struggle with when receiving ana ward  I am to name my own choice to who pass this award to. I actually was in this conundrum on my other blog, Barefoot Baroness recently. I have to beg forgiveness once again. For me to choose would mean I would be here an additional day or two at the rate I make those choices. Actually, to be honest I don’t like having to choose which bloggers I think should warrant an award. I think every one of my followers are extraordinary and phenomenal people and all deserve awards. If someone wants to throw tomatoes at me for being as cheeky to make up my own rules remember they will only stain your computer screen. And what an awful mess to have to clean up.

tjhelser2012

Triumph Over Pain Run (walk)

U.S. Pain Foundation

U.S. Pain Foundation is proud to present the 2nd Annual Triumph Over Pain: Run, Walk, Roll on September 29, 2012 in Rockport, MA.

The walk benefits various
organizations dedicated to helping the 100 million Americans living with pain.
Every participant chooses an organization to support. Eighty percent of each registration fee will directly go to the participant’s favorite cause, which he or she will select during the registration process.
All participants, including virtual walkers, receive a “goodie bag” filled by event sponsors with an event T-shirt and a Pain Warrior bracelet.
It is our intention to honor those with pain while uniting the pain community.

To register, or learn more about TOP, visit:

www.triumphoverpain.org

TOP 2nd Annual Run, Walk, Roll

September 29, 2012

7am – 1pm

Rockport High School

24 Jerdens Lane

Rockport, MA

TOP Logo, 2012 Rockport

Break on Through to the Other Side –

Break Through Pain ~ A discussion.
Intelligent, compassionate & Credible Information concerning Break Through Pain. I know from personal experience that if there is any hope for chronic pain to be managed adequately break through has to be addressed immediately for good pain management. It can be done, I am here to tell you all it can be done. A lot of team work is involved and a commitment from all involved. Ironically , or maybe not, Dr Christina’s methods and treatment modalities mirror that of  my two physicians and pharmacist who developed my treatment, and then, customized for me.
WE are not the same and our pain is not the same and if you are with a doctor who treats all hs or her patients the same way, I say, Run, Run!  ~ Baroness
If you or someone you love copes & thrives with Chronic Pain this a most valuable post from Dr Christina Lasich MD
By Christina Lasich, MD, Health ProTuesday, August 28, 2012

Patients with chronic pain and doctors that treat chronic pain, use a term called “break-through pain.” What is break-through pain?  And how is this term used in the context of a pain management clinic? Is this concept out-dated or is it still useful?

In its most basic form, this term is used to describe a pain that “breaks through” the ceiling of pain relief that is provided by other means.  Usually, a person’s chronic pain is controlled by a primary treatment; and at times, that same individual experiences sudden spikes of pain. These “break-through” spikes in pain burst through the coverage provided by a pain reliever. In order to cover those spikes in pain intensity, doctors prescribe short-acting pain relievers to be used as needed to rescue someone from uncontrolled pain.

The problem with this concept is that some people experience “break-through” pain every 4 to 6 hours; and in turn, may utilize a short-acting medication every 4 to 6 hours. This cycle causes doctors to wonder why this type of pain is occurring so often in some individuals. Based on experience and research in the field of pain medicine, doctors now are beginning to realize that two problems can lead to frequent break-through pain: conditioned pain responses and opioid-induced hyperalgesia. Both of these problems are a consequence of the round-the-clock usage of short-acting pain medications. In other words, the treatment of break-through pain with rescue medication can result in more break-through pain.

This realization has caused some doctors to completely discontinue the prescribing of short-acting opioids like Vicodin, Percocet and Dilaudid to people with chronic pain. Instead, they feel that it is best to treat chronic 24/7 pain solely with long-acting opioid products like buprenorphine, fentanyl transdermal patches, and other extended-release formulas. But that seems a bit extreme because there really are occasional times when the pain intensity gets worse. What is a patient to do if she/he needs to be rescued at those times?

What is needed to aid in the understanding between doctors and patients is a new term to replace the out-dated term of “break-through pain.” Some doctors are now starting to call the occasional spike in pain an “activity-related pain” instead of a break-through pain. This new term addresses one of the real problems in calling a pain a break-through pain. This older concept had no link to function or activity. A pain was just thought to mysteriously break-through, without trying understanding why or what the treatment goal should be. With the new term, “activity-related pain,” this situational pain can be linked to a specific activity like going shopping, playing with the children, or cleaning the house. Thus, the treatment of activity-related pain becomes focused on accomplishing a functional goal, a goal to do something. Plus, these activities occur infrequently enough that the utilization of short-acting rescue medication as needed for activity-related pain should also be infrequent enough to avoid a problematic, vicious cycle of ups and downs.

Anyone who has experienced that roller-coaster of ups and downs while trying to manage so called break-through pain knows that it is very unnerving and frustrating. Getting off this roller coaster can be as simple as changing the long-acting opioid dose enough to discontinue the round-the-clock usage of short-acting drugs. But instead of discounting the need for short-acting opioids all together, doctors and patients can start working together by replacing the out-dated term, “break-through pain,” with “activity-related pain

Only For Awareness… In September

Through the month of September is a very personal thing happening. The month is dedicated every year to help bring awareness to a very much mis-understood disease, Chronic Pain (C/P). Chronic Pain has finally been inducted by the American Medical Association as a disease, with its own diagnostic code even though it encompasses multiple over-lapping conditions and diseases. Yet this has changed little for the person living it.

As a woman and an advocate who has lived with C/P for almost 29 years I have seen little to no improvements in treatment modalities or the culture. This goes straight up the line to the actual very people who are supposed to help us. The physicians. I have been met with indifference,, rudeness, discrimination, and out right cruelty over the years.  And yet the very nature of this disease requires that we endure these kinds of attitudes & treatments or we risk losing all treatments. Sometimes even this will feel like an option. Sadly.

For over 15 years now I have participated in advocating for what I live, and I will continue to, yet somehow I have expected more bang for my buck. I will keep Hope, Dream &  keep possibilities open for yet another year.

Tracy at ohwhatapain at http://ohwhatapain.wordpress.com/is a woman who lives much of her life, as I do. as do the millions of others who try desperately to thrive despite C/P.  Tracy is also a passionate advocate bringing awareness about this chronic illness, and this month she has a special project. I am participating because I believe in Tracy, but more important to both Tracy & I is that we both believe in the importance of this awareness.

I ask that you join us in our quest. Please visit Tracy’s blog. Even if you are not directly involved chances are there is someone in your life that is.

From Tracy’s Blog this month and all month-long. http://ohwhatapain.wordpress.com/

Please answer the following questions:

  • 1, What condition(s) do you have that have led you to living with chronic pain?

Starting out with what I believe was the catalyst for all. TMJ, Migraines, TMJ Implants & the ensuing nightmare, Giant Cell Response ( poisoned by the implant materials the body sets up rejection) Connective Tissue Disease, Fibromyalgia, Cervical and Thoracic Disease.

  • 2. What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it no one is saying about life with chronic pain? )

That it is the one other chronic illness that like HIV is met with discrimination based on inaccurate assumptions from people who have no clue. From the perception that because I am someone who lives her life 24/7 in pain I must be lying, faking, lazy, a drug-seeker, mentally ill, just to name a few. If I should be enjoying my life despite being in pain only because I have been doing this so long I have created coping skills, I must be better, lying, faking, lazy, drug – seeking, mentally ill, or all of the above. What other chronic illness envelopes these assumptions?

  • 3. Which philosophy do you ascribe to:  Keep hoping that the pain will get better or learn to adapt to life with chronic pain?

Both. In order to keep functioning I need to reconcile and accept that this is my fate. I will need coping skills to make it through my life while navigating this world while in pain. I also have to hope for a better future. I’d give up if not.

  • 4. What do you miss the most that you feel you gave up because of chronic pain?  What do you do now to fill that void?

Without a doubt singing on a performance level.  I’ve not been doing enough to make certain my life is surrounded by music in alternative ways. It’s taken me this many years though to figure out such a simple answer.

  • 5. What have you heard from others that made you feel better? 

That others who care just want to try to understand. not just have their eyes gloss over even though they asked. I understand it’s boring, affects their life too. I’d like the same understanding.

  • 6. Do you feel that people view/treat you differently? How?

As I have said above in question #2. (sorry Tracy being lazy. not wanting to retype it   😉

  • 7. What coping mechanisms have you tried that worked for you?  Which ones did not work for you? (Traditional and Non-traditional)

Being creative with my hands somehow lets me pull away from my own nose and see that through immersion into a passion is a great skill. It took me some years to learn to allow myself this time when I want it but also when I need it. Today I can fill my stereo up with music, turn up the volume and paint, collage, create greeting cards, memory albums, and quote books………and on.

Also I want to give a nod to getting out side your own problems, visit with someone who is struggling with their own trials and tribulations. Perspective is a wonderful coping skill.

Thank you Tracy!

Chronic Pain Awareness Month ~ Rally Up!

September is Pain Awareness Month!

The purpose of Pain Awareness Month is to raise awareness of, and help advocate for, appropriate and effective pain care.

Learn more about how you can Take Action to help advocate for those with pain by:

  1. Visiting our Self Advocacy section to learn about speaking up for a loved one in pain;
  2. Learning more about state and federal health and pain policy outreach in our Pain Policy Advocacy section, or;
  3. Contacting your local and state elected officials to declare September as Pain Awareness Month! See more about this below.

Securing & Leveraging State Governors’ Proclamations for September as Pain Awareness Month

Obtaining a proclamation from the governor of each state or mayors of major cities to declare September as Pain Awareness Month is a great way to help raise pain to the top of the health care agenda in your area. In 2001, the American Chronic Pain Association began efforts, which were later embraced by Partners for Understanding Pain, to formally declare September as Pain Awareness Month. Since then, September has become widely acknowledged as a month to recognize the importance of proper pain management and the rights of people in pain.

Partners for Understanding Pain (PUP) is a consortium of many organizations, each with its special knowledge and perspective, but all committed to bringing pain issues into sharper public focus. PUP’s hope and mandate is to raise awareness about the sources of pain and the many resources now available to people who suffer. To help increase involvement and awareness, PUP is encouraging every pain management advocate to have their state governor declare September as Pain Awareness Month.

Leveraging your Proclamations

The steps taken to secure a state or local proclamation offer an opportunity to educate government officials about state pain issues. The proclamation and state health observance can be further leveraged by:

  • Utilizing September Pain Awareness Month as a central theme in developing community outreach programs at local hospitals, community centers or places of worship
  • Conducting a rally to raise awareness of the need for improved state pain policy
  • Planning a “Hill Day” to your state capital or to Washington, DC to meet with your Senators or Congressmen
  • Sending press releases about any of the above activities and the health observance to local media, together with an interview opportunity for a local person with pain

PUP’s suggestions for securing state and local proclamations include:

Step 1.  Identify Your Goal and Purpose Example: The goal is to obtain a Governor’s Proclamation declaring September as your state’s Pain Awareness Month. The purpose is to increase awareness surrounding the under treatment of pain in your state, to activate individuals to work toward reducing barriers and increasing access to appropriate pain management.

Step 2.  Gather Supporting Materials Identify and gather all the current supporting materials on the subject. These will form the foundation on which you are making your request. They need to include statistics that reveal the incidence of the problem with credible references.

Valuable resources for information would be the American Chronic Pain Association and the U.S. Pain Foundation. Use proclamations that were already successful as a template for your state’s proclamation. Any work that you can do for the governor’s office in the writing of the proclamation or providing suggested wording will be appreciated and speed the process along! It will also help to ensure that the finished product accurately reflects your purpose.

Step 3. Contact the Governor’s or Mayor’s Office Once these materials are collected and prepared, call the governor’s office to determine which department is responsible for the writing and issuing of State Governor’s Proclamations. This department may vary by state, and may be listed as Public Relations, Press Office, Proclamation Office, etc. Determine the name of the contact person in charge of proclamations in that office.

Step 4. Request the Proclamation Call the contact person and introduce yourself and verify that he/she is in charge of proclamations. Identify yourself and explain your mission and state your goal and purpose. Ask if they’d like you to make an appointment to visit with them and share your materials, or if they would prefer that you send them the materials in the mail for their review (use the quickest mailing method that you can afford so that the staff receives the materials soon after the phone call). Always call to ensure they have received the materials and are comfortable with going forward with the request. In some instances, proclamations can be secured over the phone, but if you detect some reluctance from them about issuing a proclamation, a face-to-face meeting to make your case can be very effective.

Step 5. Confirm Timeline Be sure to find out how long they anticipate the process to take. It is suggested to allow a minimum of 2-3 months lead time. In some instances, proclamations can be secured in less time, but it is always good to start early.

Step 6. Receipt of Proclamation Request that the office send the finished proclamation directly to you as soon as it is finished. Be sure your contact information is included on all correspondence. Ask your contact if it is possible to arrange to pick up the proclamation in person (and, be sure to bring your camera – this is a great photo op!).

Step 7.  Follow Up and Provide Feedback The governor’s or mayor’s office would appreciate information on how you intend to use the proclamation and then provide them with any pertinent feedback. An example of intended use for a proclamation may include raising awareness through media and community outreach about the under treatment of pain, inadequate access to pain care and barriers to pain management. A follow-up memo office detailing any events or media coverage will only make your case stronger should you approach them next year.

For additional information, log on to: www.theacpa.org and select Partners for Understanding Pain, Information and Advocacy. Then, select Proclamations Process Guide Toolkit

At Full Circle


I’m fully circled in the revolution of the different ways my body is attacking myself. Sometimes I think I have it licked only to find that I have done a complete 360 again from the last point where I was. A complete circle. It appears that with chronic illness and chronic pain and fatigue this is the case. Your symptoms will wax and they will wane. Mine were waning so well that I was feeling like I had a normal life again. Until 2010 when I felt the Mack Truck of Cervical disease, Connective Tissue Disease, Giant Cell Response, and Fibromyalgia slam into my body yet once again.

Those 4 yrs of doing really well, pffttt! Gone! I have come full circle again, right back where I started. And even worse at times it has felt like I have done a 360 all the way back to the beginning by the treatment from doctors and their staff.

I thought that at least I (we, the chronic pain community) has been able to move past that. But not the case. There are still great bumps and humps in the road to treating this disease like all others. And yes folks, Chronic Pain has been in fact declared a disease of it’s own. So those doubting Thomas’ out there; please next time you want to jump on the side of the fence that bolsters your thoughts, or so you think, please jump on a doctors fence and take it up with the person in the know. Or someone like me… a patient… if you dare believe.

Now that we all know why I am here with a blog called FullCircledMe and it being 12 weeks since I had the cervical procedure, an Ablation on May 31st I thought it appropriate to post an update. I have purposely stayed away from posting here on this blog because I did not want this to be my record of progress. Why? Because I was going through some rough times that had I shared what I was feeling both physically from the ablation and the Fibromyalgia  symptoms it triggered I’d have quite possibly frightened off prospective ablation patients. I think that we should have objective reporting about these kinds procedures minus all the emotional baggage that just naturally comes from being in pain and uncomfortable. I did not want to drown this blog in all that baggage of mine.  When the end result is here I can and will want to share. I either will be in the throes of presenting with pain symptoms again, and the procedure not being a success; or I could write about it without crying… if I waited until the 12 weeks is up. 

Or else I’d come to my senses about it. It will be a success and I can celebrate the twelve weeks and write about the time period of the nerves dying off and the pain being exacerbated by the trauma to the nerves involved.

So, what’s the verdict now that it’s just beyond that 12 week period?  I’m sure you’re wondering.

I cannot call the procedure for me a success. It’s really important that we all remember that we are all different and have very different bodies with very different issues. Even if you are being advised by your physician to have an ablation know that your situation and body is very different from my own.

I did not blog about the progress because I did not want to be an influence in any form. Only you & our doctor would know if this is right for you.

Being right for me was an easy answer. Yes! Despite that I will not call it a complete success it was the least invasive procedure I could go through to try to minimize the pain I’m having in my neck, shoulder and arm. I do have some pretty severe numbness on the back of my neck, under my head. And the skin and connective tissue is still 2 months later extremely sore to the touch. But please keep in mind that I have these overlapping conditions of Giant Cell Response,  Connective Tissue Disease, &, fibromyalgia which also can be what is causing me this sensitivity to my skin and my muscles still hurting in my neck. The numbness is not something that is awful and I have come to accept the feeling.  Brushing my hair is when it bothers me most.

The good news is that I can say that the pain in my left shoulder and arm is much better. As long as I am not negligent about using it, keeping in mind that even my arm and shoulder affects how my neck can feel.  I think that any discomfort in my left arm and shoulder is a long goner for the time being. Nerves grow back and when they do I may have the pain return too. But for now and the next months up to even a year after It may seem better.  It’s so much better than living on RX pain meds and aspirin. The bad news is that my neck is still a problem I’m not sure what this means and will see the doc to learn what it means to him. From there I will decide what it is I am going to do.

I’ve accepted that this was not a complete success. It bummed me out and I’d be a liar if I said anything different. Had I posted during the 12 week period and just after – my writing would have consisted I’m sure of a list of symptoms, a cry fest, a bitch fest, and even at times my feelings of just giving it all up. When you have to fight just to find a way to be comfortable physically within your own skin it becomes a  disillusion straight away.

At times  during this 12 week period I would feel too exhausted to fight the fight, mind you this is fighting the doctor’s office for help, any help, even just the appointment to the doctor of my family doctor’s choice that I see. Fighting the insurance company because despite telling them on paper for the last 12 years that my neck issue is not from a car accident but by degeneration they still insist on fighting me at every corner. My doctors notes back me up, yet they still hassle me. The fight also includes apparently one doctor thinking that she is being snubbed because I am seeing another. Mind you, this is all the while being in pain – on a scale of 1 to 10 and I am at 7 or 8.  And that is on a not so bad day.

People who think that I and others like me are doing this for drugs or attention, know this:  It would be a lot easier by all means to just go to the streets for drugs, and for attention I can think of things that would get me attention with hardly the effort.

This kind of attitude from some of my community is also another reason I have come Full Circle. I thought that I had left behind this archaic thinking and behavior in the mid 1990s. I’ve been doing this for 28 yrs now and have seen so many changes come along the way in the field of Chronic Pain. Sadly though they have not all been to the betterment of the patient, and ironically there are aspects of this field that have waxed and waned just as the symptoms of Chronic Pain.

I’m not sure as I said what my next step will be. I have taken the stand that I am not having full on cervical surgery again. I had a fusion with a titanium plate of three discs in 2000. The surgery was a complete success. I spent a year going through physical therapy and for 10 yrs I had little issues with my neck. I call that a great success. What’s next? I do know that there are less invasive procedures that my doctors and I ave talked about. What is my next option I’m not sure.

Would I advise someone to have an ablation if their doctor was suggesting it? In a heartbeat. For the procedure being as minimally invasive as it is, the recovery time being less involved than with outright surgery I think it’s so worth it. To be honest even if I had not one good results from the procedure I’d still recommend it. In fact should it be suggested to me ever again I will no doubt try it first. I am not saying of course that it is not periled with danger and risks. Of course it is, it’s your spine that is involved. But for the pain relief that can possibly be provided in my mind is so well worth the go.

I’m still fighting the good fight, if I cannot find a fix without full on surgery will the doctor’s keep me functioning and with minimized pain? I don’t know. It’s possible, but with the fears that doctors are living with in prescribing pain medications, even to those patients living daily in pain who have never been a problem, will never be a problem, we still fall through the cracks. And because of those bad apples that have created an environment of fear amongst prescribing doctors people like me who will never become addicted to pain medicine will suffer.  I have not in 28 yrs become addicted,  why would I now?  I have never diverted my medicine to someone else by selling my drugs.  I cannot imagine a credible person living with chronic pain selling or even giving their medication away. It would be like cutting their own nose to spite their face.  There is not one reason I should not be given an increase in my medication when I say I need it. This is also my fight, and I have to fight it when I am hurting so bad I can hardly hold my head up. The weight of my head becomes an unwelcome burden to my neck. I thought I was done with this. I thought I had proved myself as an honest and true person who lives in pain. That this is not something I sought out.

Going from a mystery illness, and another that no one seems to know much about, to diagnosis, and then a rather remission of sorts was exhilarating. In 2010 it once again all came crashing down on me. And in the mean time the politics of treating chronic pain has changed, and not for the betterment of patients. I had to change doctors again in 2009. I was right back where I started from. And I was in excruciating pain and extremely fatigued. I was again a lost soul trying just to have a life where I could function enough to take care of myself and husband.

Damned if you do, damned if you don’t. My honesty has caused problems for me, since I am a bit of a threat to some providers because of my honesty. I will not make up something to please a doctor. If they do not like what I am saying then possibly looking into the reason I am having my say would be a prudent thing to do. Just maybe a doctor might think of themselves with a bolt of grandiose beliefs about themselves, and contradicting them by actions and words is seen as threatening. It is something else when a doctor will actually listen to what the patient is telling them, maybe then again we could have the hopes of a quicker, accurate, and compassionate treatments may be found.

Maybe. For myself it has been a two-year struggle to be heard.
See? Full Circled Me.

 

I have heard a lot about Detoxes lately. Believing the buzz words and theories I’ve heard led me astray. I am delighted and astounded by what I learned from Fibrobulletin’s post that I am adding here. This blogger will be reblogged for his educational posts quite often here with his permission.

fibrobulletin

Watch this on youtube: http://www.youtube.com/watch?v=1eLIXylv9ms

Detoxing is the removal of toxic materials in the blood from the body, cleansing, and nourishing the body from inside out. We produce toxins naturally every day and we ingest them from the environment. Modern science suggests that toxins contribute to many diseases and promote dis-ease in general. It is also suspected that a high level of toxins promote fatigue in general.

Detoxing is really the process of bringing your system back to normal. Sometimes detoxing is called body cleansing. Detoxing is suggested to aid skin problems, digestive issues, pain, and fatigue, etc., even weight loss.

A detoxing program will likely promote significant weight loss initially for some. All detoxing is temporary and should not become a lifestyle unless it is simply eliminating unhealthy foods or toxins from the environment. Detoxing can also simply be an elimination diet where you stop eating a specific food…

View original post 708 more words

Am I Still Who I Was?

originally post of 7 June 2012

Chronic pain changes woman’s personality!

Is this possible?

Does living in chronic pain,  and all that it entails such as the medications, the treatments, the isolation, the different environments for accessing treatment that we Vitek Proplast implants face change who we are?

Do you know?

I was writing today addressing what my personality was like some 29 years ago. That before chronic pain, the disease of pain ( finally seen as a disease in itself) hit my body.

 I was different in so many ways.

Granted I was much younger then. Before Chronic pain came into my life in my early 30’s I was an active and involved person. I did not shy away from anything and believed that walking the talk also meant giving of myself to the many branches in my community. I saw where help was needed, these were insights that would later prove to be helpful to myself.

My family never doubted that I would be there to give to and fulfill my role in our little unit of four. My (now estranged) husband and I were fortunate enough that I had the gift of being able to stay home while our two daughter’s were young. We lived on 3.5 acres out in the country 45 miles from town and the nearest grocery store.

A dream.

Our daughter’s went to school at literally a little country school where the class sizes were never larger than 21 students. Graduating classes from high school ranged from 17 students one year to 21.

Each year for graduation I created the long-stemmed single rose buds the girls carried in the procession and the boys wore the same bud as boutonnieres for graduation.  I would create the silk flowers that the kids would be able to have as a keepsake. Several years we gave fresh flower bouquets to certain teachers to be acknowledged by the student body and parents.

I loved being involved with the schools and even went as far as volunteering for the PTA which led to a position as a liaison with the PTA and my states governor’s office.

 I also worked passionately to petition and push to have Union Pacific and Southern Pacific Railroad’s install cross arms on the crossing on the tracks near my daughters grade school. The tracks ran parallel to our playground and we  had also petitioned for the speeds of the trains to be reduced when approaching the school’s playground.

I was known as a rabble-rouser in my town. When I am passionate about something that I think  is necessary for a change and an action to be taken. Back then I felt I was a power to be reckoned with. A power to make things happen..

My friends & local community knew they could count on me. Springfield Oregon, and a group of dear friends knew that they could count on me for the Cannon Beach. Oregon Sand Castle Contest in 1985.  This was huge. It was Springfield’s Centennial and to celebrate and represent the city’s 100th birthday a very talented friend of ours (Sally) scaled down the statue of a white horse that greets you coming into the city to be recreated in a sand castle.

Springfield’s iconic White Horse stature that sits guarding Springfield and the banks of the Willamette River, between Eugene and  Springfield.  Instead having the horse standing up we created it in a circle laying at a tilt to the ground per Sally’s design. The plot sizes of 20′ x 20′ for adults are pre-measured and marked out before the entrants arrive. The rules are simple. No sand may be added or removed from the plot. Only materials natural to the beach may be used in the finished sculpture. Plots and judging are organized into divisions by age, individual or team, and building instruments, such as forms, used

What a blast!

Photographer: George Vetter

If you would like more information regarding Cannon Beach Oregon’s Sand Castle Contest check out link below:

http://cannon-beach.net/cbsandcastle.html

The photo image above is obviously not our white horse. I am not willing to dig an album out from boxes and boxes of albums that go back 27 or so years. The image above is from the 1999 contest. I am using this to illustrate the absolute talent that goes into creating these images, the sculptures. That is what these pieces are; sculptures of sand. Our designer for the white horse entry is an extremely talented woman who also lives in sever pain and she designed our project so that white horse would look as if it was rising up out of the ground much like this image shows the head & face rising up in the above photo. She also created in the design  a garden of “daisies” that spelled out the words Welcome to Springfield – 100 Years Old. This bed of “flowers”  bordered the front base of the white horse, in a crescent shape. It was a brilliant design that myself and the rest of the group were really just the grunt people for. We took directions well,  and in the end won the Judges Choice Award!!!

This, while I was in the throes of my disease.  With a number of the pain scale starting out at 7, by days end it was off the chart.

This a year before I had the jaw implants and I was really sick. Not able to eat solid food because I could not chew. I could hardly open my mouth to even get a straw in. Pain that to a person newly experiencing chronic pain is enough to cause you to think of doing something permanent. Not good thinking, thinking of a desperate person.

Soon participating in activities such as the sand castle contest were a thing of my past. Soon the classes that I was taking to finish my degree were too much. I had waited until our girls were old enough to appreciate that I was going back to school before I went back.  Now I had to take a leave of absence. Next came employment. I had been working full-time, and then some, as a salaried manager for a locally, family owned pharmacy/drug store. My human resources manager agreed to drop my hours to part-time to see if that would help me and yet keep my numbers up. The company I worked for was trying so hard to save my job with them. I was never as touched by an employer as I was by this employer.

But the part-time was not enough of a reduction, I had to resign. It was shattering for me that because of my health issues I was not going to be able to support my family and myself. Not that it was necessary thankfully, my then husband had a great career that afforded me to not have to work and I could not for many years. Yet in the end we did miss that income very much. The place where our girls grew up in the country was something we could no longer manage without my income. We moved back into the city, into a smaller home.

So many aspects of who I always had identified myself with were gone. My life and my lifestyle as I had always known it were gone. Was it changing me?

As the years went on and events and consequences that happened around me  left me sometimes involved, sometimes not. There were time when I was so ill that I was bed bound. It was much of the time in bed or on the sofa. Friends would call to get together and because I could not count on how I would feel from one day (or moment even) to the next I was reluctant to commit. It became almost easier to make up some other excuse to just not go than it was to either explain why it was physically not an option or to have to bail out the day of the event. Pretty soon friends just do not phone and ask anymore.

It’s not always easy to be friends with some one who is ill and not in the game of life full-time. You don’t know what to expect from the friend who is ill. It’s something that is like the big elephant in the room that everyone chooses to ignore. Or tries to ignore, I am confident that many of my friends just did not know what to say, that they finally gave up asking and feeling uncomfortable. It would be real easy to feel hurt or even abandoned by these friends. But I don’t. Instead I recognize that they were just overwhelmed with the changes that took place regarding the dynamics of our friendships, I cannot blame them. It was overwhelming for me.  I  had to give them the benefit of doubt.

So many parts if my life, who I was, what I did, have changed. I have to wonder f they also changed me.

I think I would have to say that this is so – in many ways. I’m not sure how this experience or journey could not change me. How could it not? Pain 24 hours – seven days a week for going on 29 years has to bring about changes to someone?  Medications for pain, for muscle spasms, for nerve pain, a disease that affects the central nervous system, years if relationships with physicians from all fields, massive x-rays and imaging, isolation, just to list some aspects of what living with chronic pain that has been a struggle to manage is like.

These aspects alone I see could be life changing. Especially when chronic becomes decades. It has also at times been a struggle to keep the trials of living with Chronic pain becoming depressive too. I would be lying if I said I had not also struggled with a bit of depression over the years. One thing I have noticed that is a HUGE change is that once I moved from a climate that was always gray & rainy to a climate that has over 300 days of sunshine it made a  HUGE improvement in my emotional health. Despite some of the pain spikes I am dealing with  the level of  my emotional health has held up really well and I am confident the exposure to more bright sunlight (vitamin D) is what is helping to make the difference.

It’s true that although I do not identify myself through my illness or my disease I am admitting today, to myself & to you the reader that;  Yes, chronic Pain/Illness can change your personality,  I have been changed in ways that would take a book to describe how. But suffice it to say that my confidence in myself, my trust that I could be independent, my concern of being alone someday, all these things have affected who I am. The strong, confident, “independent I need to be” woman who was there has now been replaced by the other woman who is so not those any of things anymore.

How could this not change who I was?

*****************************************************************************************

postscript:  I have since writing this in 2012 moved to live alone. I have left a long marriage of 42 years with no employment, or even the reassurance that i could hold down a job.  But I know this. I am like so many of you managing just fine. Each day i can get one foot in front of another i know I am winning the game of living my life as fully as I can Despite what Vitek Proplast Implants Bi-laterally have done to me.

Wonders Never Cease! Reposted from Barefoot Baroness.

That call came through!

After a good week of pure frustration I heard from the doctor’s office finally late yesterday afternoon. Seems there was a cancellation on the doctors Emergency Room schedule and it was offered to me. I gladly jumped on this offer with both feet before the elusive scheduler could even tell me at what UnGodly hour we would have to be at the surgical center in the morning. It didn’t matter. We were going to be there with bells on. I am at least.

The bells will be only temporary of course; as all jewelry must be removed, sans my wedding ring which I make them tape up every time. It’s been off my finger three times in our 42 years of marriage to date. I am extremely sentimental and believe strongly in symbology; meaning in this case that the ring staying on our fingers represents to me the unbroken circle of our vows. Of our marriage. I was not into taking my rings off any time I chose, willy nill.  I recall seeing aunts and cousins take their rings off for a number of reasons. Sometimes that reasons being out of anger. Seems like arguments were worth removing their rings, or leaving them beside the sink to wash their hands or dishes, often rings ending up down the drain getting knocked in accident. Sometimes not. My rings have come off once on our 20th anniversary when we renewed our vows, we had our rings cleaned and an engraved inside. Then on our 35th anniversary my husband D. took his grandmother’s ring, which she left me, and had the diamond removed from its center stage. My original wedding band was split in two, (I know the engraving is still there albeit altered now) and a third band added to it so there would then be a wide enough base to hold 6 prongs. The third time I have had the ring off was to have a prong fixed that I had somehow bent. I cherish this ring even more. Now because of its added financial value which is huge (now I know what they mean when they say a diamond is girl’s best friend) but the sentimental value is priceless. My band alone which we bought as a matching set back in 1970 held its own unique value, now with D’s grandmother’s diamond (which I never owned before) makes it a family heirloom. That to me makes it the most valuable materialistic thing I own. There is so much love in that small circle that it’s value lies out of this world.

I digress. I’m sorry.

Obviously some nervous energy shining through the story about my rings.

I am to arrive at the surgical center at 9am this morning Pacific USA time. I am a tad nervous and am feeling grateful that I am set up for  light sedation this time. No arguments from me. The first test injection I thought despite being nervous I’d be tough and not need the offered sedation. By the time they were actually ready to take me back to the OR room I was not doing so well. Despite using mediation and prayer which usually is enough for me I had worked myself up so that even my blood pressure and heart rate were both racing up the scale. Dr Swift popped in again to se how I was doing and talked to me about the sedation. Told me it meant nothing if I needed it. It did not make me less than because I used what was obviously going to help in this situation. I told him it honestly had nothing to do with trying to be tough, not really. Just that if there was no need for more chemicals why automatically accept taking them just because. But in my own anxiety I had lost sight of my own rationale.

I accepted the mediation which after a very short time entered my blood stream. I could immediately feel the warm blanket of its chemical effect and immediately relaxed. I realized then that they had bumped another [patient ahead of me to allow time for the medication to work that it was not just about me. That I was affecting the running of the operation rooms systems. I will not make that mistake again.

Checking in, putting their gown of the latest fashion on, Tied in back please. Thankfully D will be with me to help tie my gown, to hold my hand, to talk with me and side track my focus of attention. I am no way as nervous as I get when I am being given a general anesthesia, being given just a local, light sedation means that post procedure the recovery time required before being allowed to go home with my driver D. They make sure you have a driver, know their name, and make eye contact with them. I was recently in that role for my husband D,  he had his arthritic thumb operated on.  And is doing well thank you.

Shall I just bring my sleeping bag and teddy bear?

The nurses at the surgical center were laughing with us last time we were there,.Teasing me. Between D and I we will have been there at the surgical center 5 times in less than a month’s times, so the nurses were teasing me by laughing and offering us a Family Rate; and why did I not just bring my sleeping bag and stay. Thy all are beginning to feel like friends. I’m not sure what that means.

Ring of Fire.

This morning as I enter the actual cold sterile operation room where will be the two nurses I know now, and an anesthesiologist,  And Dr Swift.  All dressed in matching attire, Dr Swift wearing his rad looking glasses that are magnifying glasses at what strength I have no clue. The music in the background has already been requested. Not by me. But by my Johnny Cash loving doctor. Today the entrance song has been promised to be Ring of Fire by Johnny Cash.

Naturally!

I fell into a burning ring of fire

I went down, down, down and the flames went higher

And it burns, burns, burns, the ring of fire

The ring of fire

~lyrics: Johnny Cash

Gotta love his sense of humour!

Thanks again for all your support everyone. Know that I will use it in medication and prayer. Between the power of both those very meaningful showers of love and the use of chemistry I am going to be better than fine. I am in Good Hands by being in God’s Hands the entire time. This is what I have been needing to have done and from here on out my life that has felt in limbo comes out of that cocoon to life full force again.

I can hardly wait.

~

©tjhelser2012

Lyme disease & TMJ Misdiagnosis:

I find it fascinating that there is so much connection between these diseases.

The one factor that I know was the trigger to all my immune issues are related to my TMJ disease and the implants I had, that then were recalled. by. the FDA.

I am reposting this letter because it is a perfect point to how a proper diagnosis can have an impact on our health.\And because it is summer months when we will be out doors much more, and in honor of my dear friend who is a dealing with Lyme’s which has tried to kill her,  She is learning how deal with its aftermath.

All readers here and your family should  be cautious of Ticks anytime of year but especially now. I heard that because we had such a strange and uncommon warm winter the populations of ticks and fleas will be great, Please be careful.

 

For information on helping to keep yourself safe see the CDC;s website below.

http://www.cdc.gov/Lyme/

 

Lyme disease & TMJ Misdiagnosis:


May 17, 2012

We received the following patient comment from Gillian in response to the article in our April TMJ News Bites, “Avoid a TMD Misdiagnosis, Watch Out for Lyme Disease”.

I was SO happy to see that your latest newsletter included information about Lyme disease and jaw symptoms.

I have been on antibiotics for nearly 11 months since I was diagnosed with late disseminated Lyme disease.   If you remember, I had had a filling done, after which I developed severe jaw pain, a locked jaw and neck and shoulder pain.  Several months later, I developed swollen joints in my fingers, toes and severe foot pain.  This was accompanied by chronic migraine headaches, muscle pain and severe fatigue. I was finally diagnosed with Lyme disease by my cardiologist, but by then I had already had it in my body for perhaps 10 years or more.

To cut a long story short, I am seeing amazing success with antibiotic treatment!  My jaw pain has been reduced by almost 70% and it keeps getting better.  I am able to eat most foods now and I can open my mouth again to three fingers!  My doctor has assured me that with continued treatment ALL of my pain in my body will go away!  However, this will be a long process to recovery, possibly up to three years of treatment, but recovery is possible.

What concerns me is the number of people who are living their lives with undiagnosed Lyme disease as I was who have no idea that their lives can be completely different.  Doctors are not educated about tick-borne disease, and I have had to become an expert, educating my doctors.  Doctors do not realize that Lyme disease can be transmitted into the body in just a few hours, not after 36 hours, and that this is a disease of active infection and periods of dormancy that can go on and off for years in the body before being diagnosed.  I was having up to 18 migraine headaches a month, and not a single doctor ever mentioned Lyme disease to me.  I saw 3 different neurologists for my migraines and not one of them mentioned to me that they could have been caused by an infectious disease.     After antibiotic therapy, my headaches have been reduced dramatically, to about 3 per month, and I know that with continued treatment they will go away.

My Lyme disease doctor sees many patients with jaw pain, and one of his patients had scheduled surgery before seeing him.  He was able to save her from unnecessary surgery and needless possible complications.  Many people get bitten by ticks and are not aware of it because they are so tiny, and they may not develop a rash or flu like symptoms.  Most doctors think that if you don’t have symptoms immediately after a tick bite, you don’t have the disease.  This is not true, and so Lyme disease continues to be under diagnosed and missed in so many people.  Plus, testing is incredibly inaccurate.

I feel so blessed to be one of the few people who finally found the real cause to my jaw pain.  My oral surgeon could not understand why my speech was affected and why my pain kept on spreading. He never brought up the possibility of Lyme disease.  After I was diagnosed, I wrote him a letter, but never heard back from him.  My dentist told me that I needed braces to cure my pain and that it was all due to a bad bite.  Fortunately, when I finally saw an orthodontist, he was educated about Lyme disease and told me that braces would not solve the problem.  He told me I needed to find a Lyme literate doctor.

Thank you for all the hard work that you are doing to bring awareness to this country.  If you think I could be helpful to your community based on my experience, please let me know.  If there is anyone who finds themselves in a similar experience to me, I would be happy to help them not only find the help they need, but the support and encouragement for their journey.

Sincerely
Gillian

Patience, Where Art Though? Part Two

I have made this letter longer, because I have not had the time to make it shorter.

Blaise Pascal.

{ Continued from part one…}

I waited to hear from someone from Dr Swift’s about a schedule for the ablation this last week. I was hoping it was going to happen sooner than not. By Tuesday when I’d still had no call from his office I phoned them. I also now had a prescription that needed refilled since I was still waiting. When my call was returned his nurse told me they just had received pre-authorization from my insurance company. Really? Okay, it took over a week? A  bit unusual but I am not looking for an argument or to be a right fighter, I need the ablation procedure. His nurse continued to say that I would next hear from Dr Swifts surgical scheduler and be put on his schedule for this coming Friday, when he does the ‘burns” or the following next Friday.

That was this last Friday. I am getting even more frustrated and I keep turning it over to God. Just get me through the next 12 hours Lord. Then 12 more. And I know He will. This I do not doubt.

I missed last friday’s schedule apparently, never hearing again from his office by phone. But I received a letterr. A letter that obviously went out to all his patients last week that states as of the end of June Dr Swift will be leaving the practice he’s at now where I see him, and moving to another. “At least he will still be in town here” I tell my sinking hear.t  The thought of having finally found a physician who is proactive for my case, and then the threat of possibly losing that asset on my team is almost too much to cope with. This last week as my patience is slowing running away from me I start to feel that it’s not much different from when years ago in the very beginning of my medical curiosities I was doctor shopping for someone, – anyone –  who had answers I needed.  I waited all week, and by Thursday afternoon the hope of having the ablation done this last Friday and on the road to those nerves healing was soon a fleeting moment that danced across my mind in one full swoop and in the next right out the window it went.

And more frustration creeps in and I am running our of steam. .

I was almost out of patience by Thursday night. I think that pain wise I was just hanging on because I thought I saw possible relief on the near horizon.  It’s easy to tell yourself you can do something for a small period of time, sometimes having to break the time down by minutes by minute.

By the time I know I have at least another week to wait my coping skills that I usually am quite proud of flew right out the window.

Feeling like I am falling through the cracks of Dr Swift leaving one practice for another. Short timers at one clinic no doubt allows without malice for some things to be buried on a busy desk, packing files and etc must create a sense of chaos. I get it. It is just the nature of the beast when it comes to moving. I moved a year ago next month and am still looking for items that I know are in some box that has yet to be unpacked. (Thank you double car garage.) So I am aware of how things can get out of control when moving; and I don’t have a personal issue with the clinic or Dr.  Swift,  It’s all business for me, being his patient that is all I am interested in.

I could be wrong, but his nurse used these very words when I had to be the one insisting it was proper to go forward with the ablation after speaking with Dr Swift, and needing appointments, and nothing was happening. She apologized and said that the office was a mess and she was sorry that my procedure appointment  “fell through the cracks. This has happened twice during the process of trying to get this procedure to become a reality.

And I am frustrated beyond what is good for me. Or really for anyone else around me. For that reason and because of the pain spikes I am isolating myself in the bedroom. Away from my family on purpose. This way I do not say something I don’t mean and have to take back, My husband God Bless him and our entire family know this is what I do when the brain begins to go tilt, I am not imposing my mood on those around me that I love, Because although I am not by nature a mean or nasty person I’ve been known to get a bit negative and unpleasant to be around when I am hurting beyond what I am able to cope with,  So I choose to stay alone pretty much during times like this. I don’t mind, it’s time for prayer, devotional reading, some lap artworks,  Thankfully for everyone concerned in my family and close friendships this rarely happens anymore – that my pain level is allowed to spike so high I have trouble coping. I could take the hard-core RX meds that I have prescribed,  I have  before and will again. That would leave my choice of being in pain; or under the influence of such strong pain meds that alter who I am and make me sleep. Though I don’t do well with pain either I still choose it to try to cope without that heavy duty medication,

At this point tonight I choose Frustration over under the influence.

Maybe I’m just confused.

tjhelser 2012

 

Patience, where art thou? part 1

It finally happened. I knew it would. How I ever thought it would not only goes to show that I still have a hard time finding that middle line.

I started this second blog to journal the paths that I have taken and will continue to take for medical reasons. I already addressed why this is not being done on my main blog, which truth be told would be easier. But I wanted a certain point to this blog and I do not still want it to bleed into my Barefoot Baroness blog for obvious reasons to myself and those that know me.

I have  been battling myself with this blog, that blog, no this one, for a few days. Not being up to writing for great periods of time also has been a hindrance. But there is this strange loyalty I feel to my first blog, what I shall always refer to as my main blog. I have been behind again this week in reading those blog authors I enjoy following, behind in the kind comments that people take out of their own time to write, and this after taking a longer time from their day to read the post. I cannot get behind on thanking and responding back to these comments because in my world that is just plain rude. Not just impolite, but rude!

So therefore my dilemma has been this past couple weeks whether to write what I want, what I need, or catch up. I cannot spend hours on the computer even if I was so inclined because of what is going on with my neck. The cervical issues in my spine is what causes my neck, upper back, shoulders & arms, head & face to hurt. It is what causes after a certain period of time of typing my left arm to ache to the core of its bone and causes my fingers and hands to go numb. It goes away once I get up and move around, shaking the pure life force back into them through my own blood rushing back into those fingers that feel like your foot might after sitting on it for enough time that it goes ro what we call asleep. Dividing time that I can write currently has been my heartbreak. I have topics and feelings that need to be expressed, that need to be written for both blogs.

This has added to the frustration I have been feeling this week.

I have decided to throw all caution to the wind, let the comment and new posts alerts sit in my email box. I do hope you all will forgive me. I have opted to do what my heart, my mind, and my soul is crying out for me to do. Write this particular post. get it off my chest. Take the time and good position I have, and am in, to write what is sitting at the base of my throat. Waiting and filling up creating the lump that is not going go away unless I either write about what is causing it in a proactive way, or ignore the lump until it begins to form into tears instead.

I need to take advantage of this good position I am at the moment and write this now

No more frustration of my own making.

Position has a lot to do with causing the tingling and numbness I have in my fingers and hands.  How I am sitting, what way my neck is bent. So jumping at this time when all feeling is present is a key thing to getting down what I need to be expressed.. I can move certain ways to either make it numb or to get the feeling back into my hands and fingers for a certain period of time. When I showed Dr Swift after he asked if there was any position that makes it worse he simply looked at me and commented,” “That is really interesting!” When I asked him what it was he found interesting he said, “That you can bend your neck certain ways and cause the symptoms to come and go”

” Really Doctor?”  Cause I thought this is what you were asking.

I am still kind perplexed over this one and as I sit here typing these very words I realize that it was a rather cheeky response from him.

And I am frustrated.

I do not, and may not, ever understand why doctors feel that speaking in riddles and cryptically is so worthwhile. If it is to keep a patient off guard and unaware of what the doctors left hand is doing with the right it is working. It also than iirritates me.  I am going to try to believe that there is some clinical reason for this kind of interactions with a patient. I should say some doctors here and not all. That would not be true. I have been blessed twice in my lifetime to have two different doctors, primary doctors who are as real as people as a John Smith. The first was our family doctor, Dr Scott. He took care of my husband & I and our girls their whole childhoods and even partly into young adulthood. Almost 20 years with one family doctor. Unheard of.  In fact he has even seen my oldest granddaughter when she would be in her mom;s hometown and in need of a doctor for an ear infection etc. He will always be a member of our family unit, invited to all big celebrations and milestones. Dr Scott is one of the kind of doctors who if he does not know the answer will tell you so –  and get a source to look it up right with you there. A concerted combined effort which I always have appreciated in him. And he never apologized for it. My 2nd doctor, Dr Jeff was is just as real and with no false pretenses. I rather appreciate that take on life, especially from my doctors.

I was finally get hooked up with Dr Swift here in town where I live after some struggles. And two years of asking what or who can I see that can help. I was not satisfied with “You’ll have to learn to live with it”  With the support of my husband and a very good friend I was reassured that this was not my solution, nor should it be anyones. That I had to keep looking, hunting, doctor shopping (although in terms different than usually meant) and seeing other providers,  If took some doing getting into  see Dr Swift, which is shared in prior posts here on this blog. Now that I am seeing him and we have the two test injections which were required before moving forward with a less invasive procedure I am praying is going to help, I find I am stuck in limbo once again.

Frustration is climbing even more. No matter that I am fighting it with all I have left after first coping with being in pain 24/7;  it’s out of my control and climbing up farther anyway.

I really do not mean to be ungracious. Or with no belief or faith in the system  and community that our medical providers bring to the game. All the paperwork and red tape that comes with it, the jumping through this hoop, that one too, being a compliant patient because they hold what right now is the power to help me regain the semblance of my life back.  I do not want to risk getting on the wrong side of the doctor. or his staff. They are my way out. of this lifestyle of living in pain 24/7.

After speaking to Dr Swift almost two weeks ago we agreed that going forward was a good solution for me. I spoke with him about the possible outcomes,  any risks involved, and recovery. And where we could go from here. He assured me that taking one step at a time, especially with cervical procedures, was a prudent thing to do. I felt good when we ended the phone call, he explained to me that the next step for me at that point was seeing to that the paper work for pre-auth with my insurance company was in place and submitted to the insurance com[any.

This brings me to a week ago and I know the pre-auth has ben approved. And still I wait. And still my frustration continues to climb. I am beginning to answer my famuily in short snappy responses, I am not tolerant of much right now. It’s a real divide for my personality because I tend to be a pretty up and happy go lucky person.

But I am frustrated, and it is growing.

To be continued……

 

tjhelser 2012

Johnny Cash and Doctors

Sitting in a recliner in a surgical pre-op cubicle waiting for the second set of injections on the left side of my neck was not my most favorite thing to be doing, but it was not my least either.

To clarify again. These are just tests. Nothing that happens today, just as the last one will be permanent relief. That is what the Ablation will do. It will deaden those nerves endings that are pain generators for some time, maybe forever. Likely not but relief can be expected for months pr longer and can be repeated.

Having decided right from the beginning again that I’d not need any medications to sedate worked this time. I went to the surgical center calm,  and I remained calm. Having gone through the experience the day before helped. I still believe that facing the unknown sometimes is the real factor to fear. If taking the time to answer all your questions, even your fears tha may seem silly at the time seems like a pure waste of time; or you’re afraid to take up more of your physician’s time I promise you not doing so makes it worse.

The first injection I went into with thinking it was not any different from the ones I’d had before. Although different types of injections they were injections just the same. While going through the sign up procedure when being admitted I learned about some of the risks and dangers in doing the injections.

The it all came flooding back to me……

………..an appointment long ago with pain specialist Korena, my pain specialist who has been treating me for the past 3.5 years…………

She had been explaining to me that there were little to no treatments available for cervical patients. I thought that is what I heard and I was devastated.  I now can recall her telling me that the nerves coming out the spine in the cervical region are very tiny, tiny nerves. In comparison the Lumbar nerves are much larger.  It was also explained to me that the thoracic area that is in chronic spasms is tough to treat because the nerves are too closely located to the lungs. The fear of treating this area is puncturing a lungs. Okay, maybe I shut down.

To be honest and fair I think a disclaimer needs to be noted here that it has been brought to my attention that my pain specialist Korena may have been referring to the fact that she is a Physician Assistant and does not have at her hand and skill level the same options a physician can offer me. Not that I had no options at all. I’ll clear this up with her when I see her next because I really like her, and I like the relationship we have been building over the last 3 or 4 years. Having a team around you when learning to live, to thrive, with a chronic illness of any kind requires a good circle of medical professionals, they all bring something different to the table.`

I spent an entire 3o minutes or so working myself into a state of anxiety that first injection procedure. And about that anxiety medication that I had told the nurse that I did not need?  I changed my mind. I told one of the nurse to “Please go ahead and bring it on.”  As fast as she could.

This was not going to happen again. Either I was not going to be anxious, or if I was I was agreeing to take the med offered when offered.

For my second injection I knew what was coming. There was no more fear of the unknown as there was no longer any unknown. I’d felt a bit foolish and embarrassed with the first injection and my reaction, I felt required to tell the doctor and his surgical staff I am not normally that way and to apologize. I was able to prove that to them that was not who I was on most occasions, not needing anti-anxiety medications with this second injection.

So love it when a plan works.

No need for anxiety medication this time…. No… Really, I mean it this time.

Test  injections, both times – all three individual injections took about 10 minutes. The doctor first searches out and then lines up the nerves involved, which are called the “Pain Generators” MAKES SENSE , YES?  With the aid of a fluoroscope and a radiologists he looks on a monitor searching for where the tiny nerves are that are causing so much trouble. Once he finds the nerves he believes are involved he first make a mark on my skin for all three spots. C3 -4, C4 – 5.  A small nerve called the dorsal and medial nerve  is a branch of the spinal nerve, and it transmits pain from the facet joint to the spinal cord. Each facet nerve transmits pain through two or three of these nerves.  Medial branch radio-frequency ablation is a technique that makes use of a tiny heat source at the tip of a needle to quiet the pain transmitted by these minor  nerves . Despite their small  size, the medial branch nerves can transmit a lot of chronic neck pain.  The ablation is even less invasive than minimally invasive surgery. Which is why I am opting this route.

When patients have spinal arthritis as I do, so many structures can be reported as abnormal on an MRI, that it only serves to confuse the diagnosis.  The way to tell if a part of the body is painful is to block the pain impulses coming from that part of the body, and see if the pain disappears.  This is called a diagnostic injection.  A diagnostic injection can be into a facet joint or the nerves that go to the facet joint. as in my case  A diagnostic injection often involves more than one nerve branch at a time.  This is because if even a single nerve branch is left behind to transmit pain from the spine it can still feel awful.

As the same nurse from the day before came to get me for the injections all full of smiles he said to me, “we really have to stop meeting like this Miss, the staff is beginning to talk.You were just here yesterday and I suppose you’re going to try to come back again real soon to see me.”  I could not help but giggle like some silly school girl.  Too funny. We got into the surgical suite and Dr Swift was listening to Johnny Cash again. I talk about the song writer Jimm Webb, who wrote a lot of Johnny Cash’s music while Dr Swift and his staff began to prep me for the injections. The whole procedure was over before I know it. Painful is not the word I’d use for the sensations involved during the injections. There were times of definite odd sensations in the spine of my neck and some pressure into my shoulder and up into my head. Nothing that surprised or alarmed Dr Swift. Upon finishing the staff reassured me that for the actual ablation they’d be there too for me, always prepared to make me as comfortable as they could.,…..

…. then they told me that they would be playing Johnny Cash’s ” Ring of Fire” for me on the day of the ablation.  Now that’s Creative Thinking!

Rolling back to the recovery area I knew immediately I was not receiving the pain relief as I had the day before with Injection Procedure #1. I said so and was asked to be sure to mention it to the doctor. One aspect of the process is to keep a pain diary for where I was before the procedure at rest, and at my worst position that makes the pain worse.

0 being no pain at all  10 being the worst pain you can imagine.

 

The system of the Pain Scale which is used world-wide was invented by Basim Erzouki  to be able to reference where a persons pain level is so that communicating it to another can be understood and relatable.

The second injections pain diary numbers did not look as good as the first. Even before leaving for home and reaching the 1st hour posit injection I knew something was different. Thankfully Dr Swift was not the least bit put off by my response. As he realized I was getting a bit upset thinking this meant the Ablation was a bust in my case he quickly came to my rescue by informing me that 1st test results were conclusive enough. He told me he had what he needed and for me to go into the Mother’s Day weekend with plans to get better. Praising him and God all at once almost I practically skipped home.

I was compliant in following up on the pain diary anyway as asked and phoned the numbers in to Dr Swifts office today (Monday). I was told that sometimes with a different medicine in the second injection the response I had was fairly typical, and that too it could have been that the injection needle was not put in as deep.

Either way the thing is we made it. The injections are done, the numbers are in, and now we are waiting for the date and time of the actual Ablation

 Yes waiting….. feels like a large part of our life is spent waiting when medicine is  involved. But just imagine what a world would be like without medicine. Imagine what it is like for those people in countries where civilized medicine is low to the bottom on the totem pole.

I’ll gladly wait, even though there may come a grumble or two escaping from my lips its done in good nature, its done with great gratitude that i actually get to wait.

The second series of injections in the same site made for a very sore neck and shoulder when all medication did finally wear off. I had severe spasms even radiating into my left lower jaw. It’s nothing new nor alarming, Nothing that some heating pad time and pain medication didn’t help remove the worst of it.

 The ablation doesn’t kill the nerve.  It just disconnects the nerve arm (axon) from the nerve cell  body which lives near the spinal cord.  The nerve cell body can re-grow its nerve arm in 6-12 months Then it can be done again if desired. And who would not desire this procedure if living with sever spine pain. My husband had his done in the Lumbar region of the spine close to 2 years ago and it’s still giving him great benefit. So I have it on good authority this should be a success.

For a really good explanation about this procedure please visit:

http://www.eorthopod.com/content/radiofrequency-ablation

Its taken me a couple of days to write this. I want to be informative, and hopeful without coming across cheesy. It’s important to me that no one go through feeling like they have no options left. I’m not saying every person I come across is going to have options – or that I am an expert on their case. Obviously not. What I am saying is don’t give up hope, that I will research with anyone – anything they need to find answers. Ur to find someone who has answers,  like was done for me.

  All you have to do is let a hint sneak out that help is needed.

 tjhelser 2012

 

 

 

 

 

 

 

 

Our Acknowledgement Finally on May 12~

May 12, 2012 is Fibromyalgia Awareness Day. It’s taken years, decades to get to the point where this disease is actually acknowledged and given credibility. No longer are people like me thought to be lazy, malingering, or hypochondriac. To not be believed when you know that something very serious is going on with your body is to lose all hope. To not have an answer, a diagnosis when your life that you always knew is becoming altered in ways you cannot even explain is frightening.

My diagnosis came finally in 1991. I’d been dealing with symptoms that plagued both myself and my doctors for some kind of sensible answers since the mid 1980’s. Having that point of reference finally with a diagnosis helped in that the detective work was over. Or so I thought initially.

How wrong I was.

The detective work for treatments to manage symptoms was on. The real work was now under way. Since there is no cure for Fibromyalgia, and research is just now defining that the central nervous system and brain are involved managing all the different symptoms is the only recourse patients and doctors have.

Below is a brief yet great short synopsis about what Fibromyagia (FMS) is.

1. Fibromyalgia is a Syndrome

Fibromyalgia (FMS) is a syndrome, not a disease. A syndrome is a group of signs, symptoms, and medical issues that are likely to occur together but don’t relate to a particular, identifiable cause. A disease, on the other hand, is a medical condition marked by specific causes and clear-cut signs and symptoms. Widespread muscle pain, exhaustion and multiple tender points characterize the chronic disorder, known as FMS.

2. Gender and Genetics Are Common Threads

Although anyone can have it, more than 80 percent of sufferers, however, are middle-aged females between the ages of 35 and 55. Of those, women with a family member suffering from FMS are more likely to contract the illness themselves. Individuals with rheumatoid arthritis and other autoimmune diseases also are prone to developing fibromyalgia. Onset of FMS may be gradual or be triggered by an illness or injury that traumatized the body. Often symptoms may present themselves earlier in life.

3. What a Pain

Pain is the common denominator among FMS sufferers. The all over chronic body pain individuals experience, particularly in the neck, buttocks, shoulders, upper back, arms and chest, can be stabbing, shooting and intense. Over-the-counter pain relievers are available or your physician can prescribe a non-narcotic pain medication, such as Tramadol. Seek medical attention if you exhibit any of these FMS symptoms: forgetfulness, fatigue, headaches, numbness or tingling in the fingers and toes, fatigue, irritable bowel syndrome, restless leg syndrome and/or abdominal pain.

4. Change Your Lifestyle

Pain medications are not the only source of relief for fibromyalgia sufferers. Simple lifestyle changes also can have positive results. Low-impact exercises, such as swimming and walking, are among the most effective treatments for FMS, especially if performed regularly. Get a good night’s sleep by developing regular sleeping habits and avoiding sugar, alcohol, caffeine and eating prior to bedtime. Reduce stress by listening to relaxation tapes, attending counseling sessions and/or modifying your work and home environments. Stick to a healthy and balanced diet.

5. Be a Survivor

Thanks to the efforts of sufferers, support groups, associations and the medical community, great strides are being made to enhance the quality of life for those afflicted with fibromyalgia. Improved diagnostics and treatment methods show great promise. Be pro-active and be a FMS survivor rather than a victim. Stay abreast of the latest information and medical advancements. Communicate with fellow sufferers through chat groups or blogs found on popular fibromyalgia websites. And here at WordPress.

Fibromyalgia Diet:  Eat these foods for reduced Fibro pain and increased energy. www.RealAge.com/Fibromyalgia

Must see: Photo Galleries

Read more: http://http://www.livestrong.com/article/3867-need-fibromyalgia/#

Procedure One

Here I am awake and having the last cup of coffee I’ll be allowed before “Nothing By Mouth” prior to the first injection of the two that I am praying will allow me to move forward with a Cervical Ablation. And from there pain-less days. Cauterizing the nerves affected that are causing me the daily pain in my head, neck, shoulder and back would improve my daily life significantly. This is what I have been praying for.

I have been gearing up for this for two years. All that time was spent in detective work apparently. It is with great trust and faith I am going into this, trusting both procedure and the practitioner of this kind of medicine completely. I have little qualms going into this today. Just lots of hope.

Today is the first injection in a set of two, which are both diagnostic and therapeutic in procedure. The physician as well as my insurance company require these two injections before moving forward with the actual ablation. The injections help in telling the doctor if the correct nerves are being involved in the procedure. ie: is the doctor in the right spot. And if the injections which contain medications give me any relief, albeit temporarily, than the ablation is a viable procedure for me. All this will be done in a surgical setting, under sedation, and with my physician having the amazing aid of a fluoroscope.

I’m feeling apprehensive only in that the correct nerves involved will be easily found today. I understand that the cervical nerves are small and minute compared to the lumbar nerves, and that the need for complete accuracy is of course completely necessary. But why would it be any different for any other procedure? So the warnings are taken with great heed but beyond that I have turned any kind of worry over to God and the Universe to handle.

This morning in my mail I find this message from The Universe:

“Actually, Barefoot Baroness, if you understood the extraordinary gifts every single challenge in your life makes possible, even inevitable, you’d celebrate your challenges, new and old alike, as the omens that they are of new beginnings, spectacular change, and enhanced superpowers.
Perfect for where you are, huh?  ”

~The Universe

Hmmm…. I think this is the perfect message to receive this morning. How truly blessed am I that I have this new challenge ahead of me?

Even though this posting has a lot of “I & Me’s” in it this was not the intent – all though certainly the out come when one is writing about a medical procedure one is having.

To make the finale of this post about something else – something that is not so centered around this procedure and myself – this is really where I would rather go today. To make writing about something else entirely would be more fun. This is work right now.

That being said I still will base what I am going to say next around me. It cannot be helped in this message.  I want to thank my family, dear friends and you readers;  and those who maybe are    here looking for any answers or support. I want to carefully and with great sincereity thank yoiu for all your continued support and encouragement. It’s because of people in my life like you that I even find moving forward worth while. It is because of  the wanting to spend time with you, no matter how we spend it, that makes my life here on earth. Period.

I am most grateful for what life and those who I have around me brings to this table. Sometimes when looking only at the I and the Me the other meaningful significant’s get lost. They are always clearer to see and touch when you have set aside the I and the me. Sometimes I forget this.  Letting the gifts of new and old challenges stay set in front of self is where my eyes shall stay focused. Looking back for lessons learned; and taking those lessons to move forward is the course the ship will need to stay aligned.

And you my family and friends never let me lose course.

My ship is often off course as we all know, but thankfully & most gratefully not for long. Because  of you my dear family and friends, who always seem to help bring your own ship right along mine to help guide me back on course. How lost would thy ship be without all of you?

Just so you know…. I’d rather like not like find out.

 

tjhelser 2012

Fibromyalgia Awareness Day IS May 12th

The following SharePost was just posted by Karen Lee Richards:

Fibromyalgia Awareness Day Is May 12

Although May 12 may be best known as Fibromyalgia Awareness Day, it is actually the Awareness Day for a number of neuro-immune disorders, including: Fibromyalgia (FM)  Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS) Gulf War Syndrome (GWS) Multiple Chemical Sensitivity (MCS) This year marks the 20th anniversary of Awareness Day.  The idea was originally developed by Tom Hennessey, founder of RECIND, Inc. and has grown each year since.  Although Awareness Day began in the United States, it is now recognized internationally.  The date of May 12 was chosen because it is Florence Nightingale’s birthday.  Nightingale was an English army nurse during the Crimean War (1854-1856) and was a p…

You can read the rest of this SharePost by visiting: Fibromyalgia Awareness Day Is May 12

Additional SharePosts from Karen Lee Richards can be accessed here: Karen Lee Richards’s SharePosts

Like what you’re reading? Get convenient updates from Karen Lee Richards on Facebook, iGoogle, your personal blog and more!

Thank You, ChronicPainConnection.com Team, Part of HealthCentral

 

On a personal side not let me suggest that if you interested in credible news and updates concering these illnesses and chronic pain and fatigue I reccomend Karen Richards. I’ve been receiving her news and such for more years than I can remember, more than 10. Karen knows what sh talking av=bout because she lives it and refuses to waste time spinning her wheels on information and education that is not credible. I’m all for that.

 

Living With YourSelf & Chronic Pain

There are some days gratitude for those nearest to us is maybe the last thing in the for front of  our  minds and hearts. I know,  I have been doing less thinking about how much I appreciate my friends than I know I should. In my case thinking less about my gratitude for my friendships. and more thinking about me.

It’s been a seriously tough two years in many ways in my life & for family. All through it there has been one main stay for me, one thing I know with no hesitation or second guessing is that friends are here for me.

We’ve had some major storms to weather these last few years, having my youngest daughter survive emergency brain surgery was our miracle which we still today thank the doctors for their incredible skills and Praise God for His tender mercies. I have left my 42 year old marriage.  That was my major stress and everything else with much less impacts.

Dealing with chronic pain and fatigue while living life is an extraordinary experience. One, that knowing all I do now I would be remiss if I said I have regretted any of it.  It has taught me so much about life, other people, and about myself. Life long lessons that are now serving me beautifully, that without chronic pain and fatigue being a large part of my life I may not have ever had sunk in. They may just not have seemed important enough to a life of shallowness, and a view no further than one’s own nose.

One of these lessons that have sunk in FINALLY is that for me  housework is over rated. I used to try to live up to someone else and their expectations of how a house should be kept, someone who did not even live in my home, nor did she rarely visit because we lived 3 hours apart. That someone would be my mom. My mom was an excellent home keeper, she had her schedule, her routines. Windows on Saturday, Laundry on Mondays, etc… you get the jest of it.

Learning to live in my own skin has been a milestone reached.

I have friends who have tried to impress upon me for years  that if the bed did not get made it was not the worst thing that could shatter my home’s well-being. How right they are.

I would think back often to something my step-mom had told me about one of the reasons why my dad left my mom for her. (These things were never discussed and I certainly  as an adult know today there was much deeper roots to it) She explained that my dad often would want to do things with my mom but it was likely to interfere with her rigid schedule. One of the things he loved about my step-mom was that she made the choice to be married to her husband, not her home. If my dad came home from work and wanted to go fishing – which he often did – she would drop what ever she was doing, or was cooking for dinner, and grab a package of hotdogs that she kept for just such purposes and off they would go.  This stuck with me, but so did the ingrained upbringing, so I always had an inter-mind argument.I still struggled trying to live up to some other  unreal expectations.

My close friends knows this argument that I struggle with. Tidy house or living my life.   And since chronic illness came into the picture the “good times” that I have are less. The pain-less days and days with energy are sometimes far and few in between. That is just a fact I continue to struggle with. Finding that  fine line. Should you the reader think that chronic fatigue is somewhat like waking up feeling & tired one morning, or needing a nap, it’s much more severe. It is that and more.  Think unable to lift your head up, or even an arm. It’s systemic and not something you can just make up your mind about.

My closest friends are so intelligent. They are my support group.  They have  great instincts about life and even about me. A few of my nearest & dearest have been with me through the whole parade of implant surgery and have helped me live through the last 29 years with some grace. Not only their help & support in a thousand ways but because of their attitude I do well. My friends are not bothered if the house is trashed. As it is right now as I write. Just one of the cool things about learning what is important in life, This attitude towards housekeeping for instance is self-defeating.. I have stopped expecting  a tidy house always. Or even often. It will always bother me more than I am willing to admit, but give me a clean kitchen to eat from, a clean bathroom to clean up in, and  a bed that is most often made when I go to climb into and clean laundry and I am a happy camper. The rest is “Lived In”

It took me becoming ill from the Vitek Proplast implant materials poisoning me to finally learn that being “Lived In” is good enough. And sometimes even “Lived In” and a mess are okay. For instance I am in the middle of writing a book and my little apartment is holding its own albeit I have been neglectful. But I don’t mind, today I am living life.. I have a vivid memory in the very beginning ( now almost 30 yrs ago) of becoming ill & standing at the sink after dinner one evening. I was doing dishes and in tears. My now ex-husband busted me. He asked me of course what was going on. I just sobbed: “These dishes have to get done, the girls bathed and I have homework that’s due tomorrow, and I hurt like hell!” Taking my hands out of the soapy water and as I watched with tears still streaming down my face  he rinsed my hands and said to me, ” I think you just need to take care of yourself right now and let everything else go.”

And Me:  ” Buuuuutttttt!!”

But nothing. The very next day I took a leave of absence from school, dropped from managing a pharmacy/drug store  to assistant manager, and working just part-time. Things would go from worse to better but that’s a story for another day. Leaving school and working part-time helped me be able to bathe my own children at least.

And that’s the point. Giving up somethings for those more meaningful and significant, is it not?

I have been dealing with a mobility issue from  the spine disease in my neck  which has also now moved into my thoracic, which also has been causing symptoms in my left shoulder and arm for quite a while.  Over a year ago it even was to the point of not driving for about 6 months. I was dealing with severe pain every day, and limited function. When I felt well enough to do something I would choose to do something I enjoy of course. If it were my choice alone I’d let the housework go and create something or write. And housework is not so much part of what I enjoy.  That being said it has taken me raising 2 daughters, 3 foster daughter’s, all their friends, a small zoo of pets, and chronic illness to learn that the roof will not cave in if the home  is a mess, I’m even to the point of being grateful should I be caught with my hair down so to speak by friends. I know I have nowhere to go but up. That is pretty good for me.

The point of this post is about the love for my support system teaching me what matters.  And my gratitude. My gratitude is  particular, but a tribute to all those that help people  like me navigate the rough waters and wild tides of a life altering event.

As I sit and write here at  my cluttered dining room table listening to an April snow & hail storm in my front yard I am looking up every so often to see this giant mess of research books, loose papers, pens & pencils and my trusty mug of coffee. Across the room from me sits my art supplies for creating hand crafted greeting cards. All cluttering the small apartment. Oh, I have an art room for such things. Why I gravitate to my dining room table is a bit of a mystery but its what I am doing and I am accepting its what feeds me. In the past I would have been bothered by thinking my mess was annoying to someone else. Today I am trying to please myself in this area.

Like now.

I have reaffirmed to myself that if it’s not bothering me the logic  I now have goes something  like this: “Why go to all the work and energy to move it all when it’s not going to be bothering bother me,? It’s not going to be bothering  me being here, and when I return to craving very quickly the want to work with paper, glue and scissors again and I will not have to move everything back out.  Logic. Something new for me.T

There are yet more lessons to be garnered from this logic and attitude. Number one; that life is too short (and my days are shorter because if I don’t take a nap I’m likely to make it through dinner but be asleep soon after) to be spent in moving art supplies from room to another just for the sake of neatness. Number two; that when my spouse, my caretaker in life, says he is not bothered by a mess he means it. And number three; that I have the greatest roommate in history and I should be more mindful of my gratitude for his attitude than I am.

Because of D’s attitude and awesome logic I am learning that there really are more important and significant things to me and in my life than an immaculate and tidy house. That when there is energy to be expended I can give myself the gift of doing what I’d like rather than what I used to think I should.

Actually this is a gift my husband has given me and continues to give me every day of our incredible life together and being grateful is so easy that I am ashamed that I am not only more mindful of it, but also that I don’t take the few seconds to tell D. more often.  I’m a firm believer in that people need to hear these things from us, we need to make certain that those who care for us and love us no matter what our warts are know that they are the reasons our life works for us.

Thank you D for the time and freedom to do as I please most often during the times of less pain and high energy. You make my life so worth living in spite of the chronic symptoms that so crowds our lives.

You Sir, may be the Captain at the helm of my ship any old day! I so love you!

tjhelser 2012

Options, Choices, & Druthers

It’s been a bit since I touched base here and that is the whole idea. However it does take a willing partner to do the writing. That partner of course would be thy.

Last time I wrote I was in a pretty crazed state. having just returned from the second meeting with the doctor that took some doing to see. It was a good meeting and I walked away feeling some hope.

HOPE  must be part of the program that gets you through living with chronic pain. One of the Big guns in your arsenal against 24/7 pain.  It’s different from acceptance which is also vital, But hope is what sometimes all we live on. And if that hope is somehow taken away or smashed out right in front of you it can have devastating effects on your soul forever. After being told there was nothing more that could be done for you –  can leave a scar that will take some time to heal. It is about a bond of trust between healer and the ill or injured. Hope for me happens to include being based on the ability to trust and turn to My Team Captain, a person who will vow to help me navigate through the muddy and swelling waters of illness and help me find my clear course.

It was brought to my attention in the most gentle &, loving unintentional way today that I should share a bit more about what is going on with me here on my blog. This blog  Be real. I tend on my other blog, Barefoot Baroness, to leave my health stuff out mostly. And certainly I try to remain upbeat. It’s not hard most of the time as I am by nature a happy person. But there are times when like all persons, especially those who deal with any chronic illness and/or intractable pain  that are unable to get a handle on the symptoms no matter what they do or use. I know. Foe me it’s pain and fatigue. The fatigue is bothersome but I can cope.However with pain there are days when all I can do is pray for merciful drug induced sleep. Those are the days when I am unable to power over the spine pain.

And then I also have Mack Truck days, where everything hurts, don’t breath on me kind of pain. It feels like my whole body is on day 2nd day after an awful car accident. I have heard other “Fibromyalgiacs” refer to this wide-spread pain as feeling as if they’d” been hit by a Mack Truck” too.  It’s on a pain scale variety anywhere from 4 to 7. 0 being no pain – 10 the worst you’ve ever felt. Such as where I have been with the spine pain. It’s somehow much more difficult to find alternative ways to handle the spine pain. I’ve been told that nerve pain, which of course would be spine pain, is the most difficult of type of pain to treat.

I have been living with the Mack Truck pain and the Spine Pain for too long again. I’ve gone from years of having no clue how to cope, to doing really well, to this again. And what was frustrating was knowing all the time that there are options, that there had to be. That at 57 years old a normally other wise healthy woman was told that there was nothing left to be done short of more spine surgery; or else live with the symptoms that don’t get better could not be so. Oh no way. 

I hope not to rehash things I’ve written about over and over. My hope is that this will be a profession on my part of all that HOPE brings.

My HOPE was restored with my new doctor.  Dr. Jon  Swift, who is now my new Team Captain. He will help me by being the manager of my team research  for what’s best for me, what my options are worth considering, and all the factors involved. He will help me find adequate treatment and he’ll apply it.  I’ve learned a lot since those naive days os the early 1980’s when I was implanted with toxins but I’m still a layperson and often at the mercy of my teams knowledge and education. It’s imperative to trust your team, and to have someone trustworthy at the helm of your ship.

Almost one week ago I met again with Dr Swift, our third of now three visits. It was even better than the first and second visit. Of course that isn’t saying much considering the first time I was angry, the second time in more pain than I knew how to deal with. This man is a huge guy. I am a short woman. I also have cervical issues and a cervical fusion which makes looking up difficult and tiring to my neck muscles. This kind doctor who obviously works with many patients like myself.  As we were talking I suddenly realized he is lowering his stool. He never missed a beat listening to me which was clear by his responses, He lowered it to where I’m certain his knees could not have been comfortable, just by seeing them almost touch his chin would tell even the dullest lightbulb this was not how he would choose to sit. When I thanked him later as I was leaving for his time and this gift, he spoofed. He actually spoofed! He said that if he is the doctor  he should be and could not read the discomfort in his patient’s eyes while trying to talk with him than he was in the wrong profession. If this man had done nothing else for me I’d still like him. I mean, what’s not to like, right?

After spending 20 minutes talking about my shoulder x-ray results (which are fine), where and what all of my upper back, neck, left shoulder and arm symptoms are from (my spine) we then talked about my options.

Yes, sweet options!  Choices. Druthers. How novel.

Oh, one other thing he did that day to which endeared me was he scheduled me for a brain MRI. Since it had been more than 20 years since I’d had one,and technology has changed just a tad bit he thought it wise. I have chronic migraines. He was just being prudent and as it turns out that image was awesome too. Nothing to report except the hot spots which he explained and I’d been old before are from Fibromyalgia. (And there are still non-believers?)

My problem with my spine aside from the osteoarthritis (which is really something that not much else can be done for) is I have a few things making my spine unhealthy. I have the  3 blown discs for which I have a grafted fusion of a Titanium plate for in 2000, and albeit the hardware for the fusion and the actual graft are really healthy my spine is diseased above and below the fusion. I also have stenosis and spondylosis and included with these are the Giant Cell Response, Connective Tissue Disease. and Fibromyalgia. Just the big guns do I bring to this party.

The fibromyalgia, Giant Cell, and Connective Tissue Disease all can cause pain too. And I am one of the blessed ones.I can feel pain. But there is a big difference in the pain and I just have been learing why. Because of these illnesses and conditions I have both muscle and nerve pain. It had never occurred to me until recently that not all pain is treated equal. We’ll get into why this is so in a later post but suffice it for now to know that I am just learning how to tell the difference and that they are treated different.

Who knew?

Not me. Not me a woman who professed to be an expert about her own pain. Hmmm…

So now I know all this information. What is going on with me, why. what is there that can be done about it. and how?

I was overwhelmed with options. From doing nothing, staying medicated until I will need stronger meds and more of them, participating in lifestyle changes and Physical and Occupational Therapy, alternative treatments, less invasive procedures to out right cervical spine surgery again  And everything in between. I just learned something too about my new Dr Swift, that he is not only a Physiatrist, an anesthesiologist, but he is a DO as well. I have come to expect liking DO’s very much in my latter years. Something that kind of has surprised me. I think I was a snob. There is something about being treated holistically that works for me.

We decided together to order the MRI for the brain, schedule a series of two injections to see if I am a candidate for a procedure called a Cervical Ablation by radio-frequency/ Often referred to as laser ablation. Often also being done for the lumbar spine..

A little homework~

“Radio-frequency waves are electromagnetic  waves which travel at the speed of light, or 186,000 miles per second   (300,000 km/s). Radio-frequency Energy is a type of heat energy that   is created by a special generator at very high or super high frequencies.   With the use of this specialized generator, heat energy is created and  delivered with precision to target nerves that carry pain impulses.   The resulting “lesion”involves a spherical area of tissue destruction  at the tip of the RF needle that can include pain-carrying nerves.”

Why is this procedure done?

Radio-frequency ablation/lesioning  is a procedure used to provide longer term pain relief than that provided  by simple injections or nerve blocks. Many patients who are being considered  for this procedure have already undergone simple injection techniques  like Epidural Steroid Injection, Facet Joint Injection, Sympathetic  Nerve Blocks, or other nerve blocks with pain relief that is less prolonged  than desired. By selectively destroying nerves that carry pain impulses, the painful structure can be effectively denervated and the pain reduced  or eliminated for anywhere from a few months to up to 12 months.

I’ve obviously had the ” already”procedures and the two injections prior to the actual ablation has a two fold purpose. One to tell my doctor if this is a viable procedure for me, having benefit. And two is to for the doctor to find the exact nerve endings involved. This is done under a fluoroscope. I’ll be sedated for the injections as staying as still as possible is paramount. There is still risk even though it’s considered pretty non-invasive. Because of the location of the nerves in the spine and because they are in my case  -near my lungs. Great care is necessary so no temporary or permanent side effects are part of the procedure.

I have read, researched, insisted on material, talked, and prayed about doing this. Is it the right thing for me? I hope so but no one knows that. Not even my doctor. I do know that living as I have been is no longer an option. I don’t mean that in some dramatic fashion. Not al all. Just so you all know in case I happen to write and post on a really low day, no matter how low I may get, how desperate I become, I could never cause any harm to myself. I’m just too much of a believer in not. (Enough said about that)

Finding this doctor who I have actually known about for a year now has been nothing short of life affirming for me. To once again have options is an incredible gift. I should never take for granted that freedom again.

I know the heart ache a person goes through being told one thing to your face by a physician, and then finding his or her actions completely different. I don’t understand how trust can be such a double standard. Why must it be expected that I be trusted explicitly? And my doctor not be held to the same standards in our professional relationship?

If I had my druther, I’d druther trust every health provider that came my way on this journey at face value. And if I had a choice I’d rather choose to be trusted by the simple standard of the honesty of my word and actions alone.

Is that enough for you?

 

tjhelser 2012

.

 

 

 

 

 

 

When All Else Fails

JUST CRY!

Sad as it is to say, it helped

I’m a bit embarrassed by the most recent meltdown in a meeting with one of my doctors. But it helped.

I’ve been having an issue for some time either being heard by my physicians or they were actually stumped on how to help me. Which it is I’m not sure but it really does not matter now that I have some proactive doctor’s on board now.

It has been a struggle to get to this point and maybe that was why those irritating tears came. I’m not sure about that one either.And normally I’d be so mad at myself I could spit. Not this time though.

This time I am grateful I suppose that the tears came, because without I’m afraid my sincerity in what has been going on with me pain wise would not be taken as seriously as it finally has been.

I’ve been plugging about on a daily, and nightly basis on a pain scale of anywhere from 6 to 9. To those of you don’t know what this means let me briefly explain. Physicians  use what is referred to as a numerical pain scale for their patients to explain how much the pain hurts. It’s all subjective anyway, what pain is to you and to me, but it gives the doctors and patients a point of reference they’ll both be able to relate to. With the pain scale ) is no pain at all, and 10 is the worst pain you have ever felt in your life. Think beyond natural child-birth for the 10. (sorry, I could not resist)

Yesterday when I saw the doctor my scale number was sorely at about 8.5. I was at my wits end pretty much and although convenient for a doctor’s appointment it is exhausting. To keep one’s self together emotionally takes a lot of restraint and work when you are in any kind of pain but chronic pain makes it even harder. Think about your worst headache in your life, and magnify that times years. That will give some idea what the day after day can do to someone.

It was actually serendipitous that this took place the way it did. Thank you God!

I’d been heard finally.

This was just the second time to see this new doctor who is now part of my team. I’d been told about him some time ago but for a lot of reasons hesitated to make that appointment to see him. At the urging from my “Bestie” friend, and my internist who both recommended the same doctor, I finally made the move to get an appointment. Who knew what a fiasco that would turn out to be, and the Bee that I would create in a few bonnets. When I phoned to make the appointment I was first put through a 3rd degree process on why I was wanted see this person when I was already established with a Physicians Assistant at the same clinic. This was a bit discerning bu I have learned to go with the flow when dealing with different clinics and doctors protocol. I suppose they have their reasons. However I was not allowed to make an appointment with this man. I could not get it through his guard desk that I was only wanting to see him for two reasons. One that my own primary doctor wished me to see this person, and two, I needed a second opinion on what my prognosis is, and what options I had. Because you see, I had been told there was not much else that could be done for my pain and more importantly what is causing it.

So. I was told I could not see this doctor. Now what? In th end it all worked out fine, the doctor in question somehow was communicated to that I was not number one looking for drugs; (This is always the first concern) and that number two  I had been vetted by my own primary doctor and physicians assistant. After a little bit of let down, great frustration, I had put it away, let it go to God, and went on vacation with my Bestie friend to the coast. It was while there not even thinking about my health concerns that my husband had received the almighty phone call that the doctor I’d been told to see would in fact now see me. No explanations, no apologies. Just an appointment. I and my dear friend who had helped me through hours of sharing and had helped me put it away celebrated the appointment. My husband & I celebrated the appointment albeit long distant from one another at the time.

The first appointment was less than rewarding, but it did leave me feeling more hopeful than I have in almost two years. That’s how long this battle of a flare up in symptoms have been going on. Not anyone should ever have to fight for any length of time to find and receive adequate timely treatment. Whether it’s for a broken hang nail or pain. Not in the great U.S. if A.

At this first appointment I was given options no one had given me before. Options? Now there is an original thought, no? I made my first of many to come decisions to make then and there; I had a diagnostic injection, which was telling in that it helped none In no way. We set about a primary plan of action and I felt at least that there was someone who would help me move forward in this life around pain rather than just spin my wheels.

Good.

Yesterday those plans of actions moved forward a bit more. And what a good thing too as I was at my wit’s end as I said. Not certain I could take another minute feeling physically what I was feeling, and having it all exacerbated by my exhaustion which led to an emotional meld down. The next steps in the plan is a series of two more injections; In my cervical area and under a fluoroscope, so that the doctor can see exactly which nerves are involved. Once he finds the exact nerves that are the problem children in my spine he will then inject numbing agents and steroids to hopefully calm the inflamed nerves down. It is that inflammation that is causing the nerves to swell and become irritated hence forth causing all my cervical pain. This pain which also radiates down into my left shoulder and arm and up into my head is what’s doing me in. If I get any relief from these two initial injection this will be diagnostic in terms of this tells which nerves are involved and then the actual treatment can happen. That treatment is called a Cervical Ablation. All this means is the nerves will be cauterised with laser lights, killing off the nerves ends. There by removing the source that tells my brain there is pain.

I know it all sounds rather science fiction. But I know from living with someone who had a Lumbar Ablation as well as other people in my life that this can be a really good treatment. For my husband it helped in the end. It took some time for the nerves in his low back to “die off” after the treatment. This is not unusual from what I’m told. So I’m going for it. It is the least invasive treatment offered that will have positive results, with the littlest risk and side effects. Right now I would be willing to have my neck amputated except for the small logistic problems this would likely cause. So this Abalation sounds like a cake walk.

In the mean time I knew I could not face another night of no sleep and hurting until we get to that point. I needed to know what my options were to get me by until this happened and the efficacy was in place. I’d not make it till then if I had to attempt to keep going as I was. The doctor saw in my tears and pleading my earnest attempts to be doing everything I can to help myself. Not to mention this second attempt at PT/OT for the second round in less than two years. The first 9 week period did little to help my pain, a lot to keep my upper body strong. This second attempt is a lot more proactive at treating the pain symptoms, although it also proves that those upper body exercises were so worth it.

I left the doctors yesterday feeling absolutely washed out. But I also left with a great plan of action, and some immediate pain relief. It’s just temporary and not what I’m looking for as a long-term solution, but for this week, this month, it will help get me through until I get passed the two diagnostic injections and then the actual treatment, the Ablation.

So this night while those around my world are sleeping I’m awake writing. And praising God & the Universe for not just the practical skills this specialist of a doctor has, but also for his people skills. And lest you all believe I am throwing my PA under the bus please know that I know her hands were tied. She sadly is not a physician and there for does not have at her finger tips all that is available to a doctors. Even her prescribing privileges are not those that a doctor has. I really adore my PA. I wish that she could be the one providing 100% of my care. But since that it is not a possibility I am grateful for this man. I’m grateful that my awful display of emotions were not seen as anything  more than it was.

Tears can be seen as a way of manipulating. especially by some men who don’t have the understanding of how women’s nature tends to work. And the people skills to analyse where there are coming from. But these tears, and all of my tears, are never something I use. At least I am not conscious if I am. Instead I am always embarrassed and angry that I cry. And although I tend to tear up easily lately it is not my nature to normally do so. I’m grateful and pleased that this doctor saw what they were about. I’m glad he could see that I am fighting as hard as I can to stay on top of the pain that riddles my small world. I’m grateful he can see that  I am doing all within my own powers to get by, to keep functioning. As he told me, ” You have a lot of reasons to be in physical pain, and just a few to be in emotional pain from what I can see here today. I’m here to tell you Toni that we are going to get you out of both.”

And more tears flowed….tears this time of extreme gratitude and relief that someone who can help is doing so.

copy write tjhelser 2012

Patient’s “Bill of Rights”

Because in future posts on this blog these rights are going to come into play I thought it only prudent to post exactly what I will be referring to. These are important rights as you’ll see upon reading and informing yourself. If you find they do not apply to you personally than I beg you to interject a family member or close friend’s name as the patient’s name. Even if they do not appear to have any such need for these rights I urge you to pay attention because one day we’ll all by the “Grace of God there goth thy”.

{Note of Disclaimer: Not all states abide by these rights, as they are not mandated yet in every state. Not because they should not be but because there has to date in most states been enough combined voices to be heard.  It’s my hope and mission to see that this happens.}

Pain Patient’s Bill of Rights

You have the right to:

-Have your pain prevented or controlled adequately.

-Have your pain and medication history taken.

-Have your pain questions answered freely.

-Develop a pain plan with your physician -Know what medication, treatment or anesthesia will be given.

-Know the risks, benefits and side effects of treatment.

-Know what alternative pain treatments may be available.

-Sign a statement of informed consent before any treatment.

-Be believed when you say you have pain.

-Have your pain assessed on an individual basis.

-Have your pain assessed using the O=no pain, 10=worst pain scale.

-Ask for changes in treatments if your pain persists.

-Receive compassionate and sympathetic care.

-Receive pain medication on a timely basis.

-Refuse treatment without prejudice from your physician.

-Seek a second opinion or request a pain specialist.

-Be given your medical records on request.

-Include your family in decision-making.

Would it not be some world where all these rights were a given?

Thanks so much for coming by, whether your intentions were or you just happened by.

I’m grateful.

tjhelser 2012

Circling Fully

Circling Fully

 Barefoot Baroness

Finding out that you are sitting through life on a brick wall that you’re going to tumble off anytime is dis-heartening in a lot of ways. Some people may even find it earth shattering, especially if they happened to be an athlete. I’m blessed in that I am not an athlete and the diagnosis of the condition of the mechanics of my body being in such poor shape has actually been validating. For the first time in two years someone is not just listening to me but is being proactive.

It’s not that my other medical providers have thought I am malingering. In fact my pain specialist and I have a great friendship even. One of her colleagues who I have seen for second opinions told me a few weeks ago that just looking at the x-rays of my shoulder, neck  and mid back he can see why I am in pain. As he added “You’re a mess!”

Meeting with the Occupational Therapist was exciting as it turned out. Despite some news that my body has been developing its own way of handling things I have discovered that there is a lot I can do to maybe make things better. It sounds like tremendous work, some of it sounds utterly ridiculous to the everyday situations. But because I am at my wit’s end and the options I am looking at again to make things better involve more steroids, laser burning of the nerves involved. Or surgery. None of these are attractive options to me.

Having surgery on my neck in 2000 to have a titanium plate to be part of the fusion between my blown out discs.It was an implant, I was freaked!

After much research, a sensitive surgeon who gave me him home number and said call him whenever with whatever concerns I had, and pain and dis-function I decided I had no choice.

It was a major surgery; I was in surgery for close to 12 hours, recovery for 18 and in the hospital for seven days. It was not the picnic it sounds like being in a hospital for a week to those who have never been and think it is a vacation. I had people  tell me how wonderful the weeks vacation must have been, a whole week in bed being waited on.

Really? Not so much!

The surgery was declared a success by my surgeon, my internist, and even my physical therapist then. My recovery was about 14 weeks and then a year in physical therapy after. Three times a week. I did really well, was doing awesome for close to 10 years!! My fusion still looks great, the hardware is solid and in place. My problems are below and above it in the spine and broadcast throughout the brachial plexus. I have serious spinal stenosis and spondylosis. Along with all these things I have I also have good old osteoarthritis.

According to my Occupational Therapist I have been working with; this body has been broken for so long that what I’m doing just feels normal to me.  For instance I have a real issue with keeping my shoulder’s up around my ears. I am in permanent shrug. It was something I never even realized I was doing until it was pointed out to me and it’s something that despite 12 years of being mindful of it I am still not good at keeping my upper body as relaxed and limber as it would better serve me. I remember the first time I was told this. I looked at the therapist and said, “So. I see it but so what. It’s what I do” Right?

Wrong! What I am doing to myself by not getting a better handle on this even over the last 12 years is cause further damage. Maybe when I was in my 20’s this would have not hit so hard. I hope it would have some effect on me but I kind of doubt it. I have been trying for 12 years to get a grip on relaxing my shoulders and unless I am constantly mindful of it I am constantly blowing it. Driving (when I drive) with my shoulders wrapped up around my neck and tugging on my ears is how I drive. To do anything else takes such concentration that I lose focus off the road. Scary! Trying to tell myself to relax those shoulder muscles, to just breathe into my core and sink into it is not something that comes natural to me at all. I’m not sure it ever has. I even wonder if all the years I was in gymnastics and if I had this peculiar body posturing why my coach never said a word.

There have been doctors, nurses, therapists throughout the years that hinted at something but maybe they felt my aversion to doing anything that involved life changes. I thought I was so smart, I thought the life I was leading was healthy and wise. I’m learning now at age 57 that a huge part of what I believed I had figured out, I have little accomplished.

The therapist will be teaching me the difference in nerve and muscle pain. This is something that never even occurred to me that it would serve me to know the difference. I’m not sure I even realized there is a difference. But there is, and learning to know the difference is one of the first things I will be working on.

The technique in this new program that I am engaging in is called Desensitization. It’s just like it sounds. My body’s nerves are hyper sensitive to any stimulus that it’s exposed to. And one of the ways I’ll learn the difference between muscle and nerve pain will also teach my body that it needs not react and be so hyper vigilant when exposed to pain stimulus. Because the wiring of my nervous system is all louse up any time my body is exposed to anything that is stimulus it can trigger and be perceived erroneously as exaggerated pain. Pain that if someone healthy felt the same thing they may not feel it at all, or only mildly.

This treatment or program is going to help my brain relearn what is normal and what is not.

If it sounds confusing, It is. But one of the things I was told that I found incredibly comforting, ironically, is that I do not need to understand why or how this is going to work to begin. That’s not something normally I would accept. I am an analytical person by nature and it is not like me to just say “Oh Okay, just do it. You don’t need to have it figured out for it to work”

But this time for some strange reason I don’t feel the need to know. It’s enough for me that this person who has been studying and working with the body for almost 40 years knows what she is talking about. And she has testimonies from patients that have graduated, if you will, from this program that they are doing, and doing really well.  Clients like me who for half a century have been carrying their body a certain way, unknowingly all that time that they were causing damage and bad habits. Who knew?

Not me.

So my feelings are more hopeful than they have been for some time. It’s going to involve lots of life changes but I’m so ready to start.

My first sets of homework instructions seem simple enough. Get a shoe brush, a soft one meant for buffing. I am going to be brushing my body with it. Really! It’s all part of the desensitizing that I am beginning to teach my brain and body. Also I need to ice several times a day, get a vibrator that  I will not even lie on my body, instead It will lie just next to my neck on a pillow.

Pillows are another life change. This one will be easy though as I already am a pillow addict because ironically I am doing what my body naturally wants me to do. Support my arms and shoulders with pillows under them which in return will also support my neck .This will help the whole upper body to relax. I use pillows but carrying them with me outside the house or in the car will be different. Such as this very instance; I am sitting in a medical clinic’s lobby waiting for D, my husband who is having a procedure done. I knew if I was going to type to grab a table and chair. But did I remember pillows to use here? No….

Another thing I am going to need to purchase are about 10 of those foam pads that are for knees in gardening. They are meant to soften the hard ground that you’d be kneeling on while gardening. I’ll not be using them in my garden or for my knees.  I’m told that I also need to sit where my feet can touch the ground. I am short and short-legged. So adding some height under my feet by using these foam pads makes so much sense. I could tell yesterday when I tried them at the OT office just how much more secure I felt while sitting. I never realized before that when my feet don’t touch the ground my body is left to dangle. No support. I was shocked by how much security I felt by just adding the 12 to 14 inches more for me with foam knee pads to rest my feet on.

So my shopping list for tools looks like this:

•     10 to 12 Foam Garden Pads

o    A Soft Shoe Brush for Buffing Shoes.

o    A Vibrator

o    A Couple New Pillows that I can carry with me

I’m really excited to get this going. I am so tired of this deep radiating pain that feels like it goes into the very nerve centers of my spine. The massages and cervical traction three times a week are not doing a thing. Don’t get me wrong, I adore massages. I want massages. But I need the therapy I’m paying for to be something that is resolving my issues, not just putting a band aide on them for a couple of hours.

The most hopeful I’ve felt in sometime and when I meet with the neurologist next week I am talking with him about that I am waiting to do anything more invasive. I’m willing to take the risk of this therapy taking a bit longer than a more invasive type of treatment would. But there is not a guarantee that having a more invasive procedure is going to help. I also do not want to confuse therapies. I want to try one at a time. This way knowing what is working, what is helping, what is doing the trick, this will be accurate information, not muddled because we’ve thrown two or three treatments at one time at my body.

That’s it for now. I’ll try to keep this up.  Documenting this is so important. Giving my doctors my blog wed site should prove very interesting.

Don’t you think?

tjhelser 2012

Vitek Proplast Implant Group

Previously posted on Facebook  August 3, 2016

 

vitek group cover

Sharing something very personal about myself regarding health issues on FB isn’t typically my shtick Some of you know my history with failed medical implants (later recalled by the FDA) that destroyed my jaw joints and my immune system.
I was implanted in both my jaws this month back in 1986.
Since 1990 when the FDA recalled the Vitek Proplast because the Teflon & Silastic coated implants fragmented I have been on a mission to find others like me.
In 2010 I created a blog called Full Circled Me to try to foster a community of survivors. I have had some success but keeping up with one another has been hit and miss.
Recently another survivor (I refuse to see ourselves as victims albeit we certainly are) found me through her search on FB. We chatted, we spoke on the phone, and she helped inspire me to once again search for others.
It’s a strange long story that the medical community wants to hide under a rug, but WE are not going away and WE will tell our stories.

I have created a closed FB group for survivors and I’d greatly appreciate it if you would support my mission by sharing my story. I will leave a link in the comment section below if you are more curious about my own experience. Please know that mine is not a sole experience. There are thousands living like I am- I want to find them and you can help by sharing.
Thank you so much for taking the time.

https://www.facebook.com/groups/157920497947552/

If you are an implant survivor please private message me.

Medical Implant (Vitek Proplast) Biograpghy

Vitek a company which in then in the 1980s changed my life and turned it upside down on my head.

Image below is the implant

Vitek Proplast intro-positional TMJ (jaw) Implant

  • Closing in 30 years of living with the results of failed medical (IPI ) Vitek Proplast implants  (Jaw joint Implants)  I have spent the better part of the last 15 years looking for other victims. Victims who like myself are still surviving the toxicity of the materials the implants were made from and that our bodies are rejecting.

We are an island of our own. It has become painfully obvious that to learn anything about our own prognosis we are going to have to gather the data and information ourselves. The medical industry is reluctanct to speak to us about anything related to the USA – FDA Recalled  Failed Medical Implants.

It has been almost 30 yrs for me. I still do not have a clear prognosis albeit I have been given several overlapping diagnosis.

There are many reasons for this post and the main reasons I created Full Circled Me. I know that we need to gather & communicate with those of us who are also surviving the Vitek Proplast Implant medical disaster. We are living a medical nightmare.

If we do not begin as a community we are going to lose even the raw data. I am not being dramatic.
This is a living disaster and I am willing to go out on a limb here and say to you that less than 10% of the population in the USA knows about this disaster. I am being very generous. The number of breast implant victims pales us in comparison. Patients own family members don’t know. Our hope and desires is to spread the word we are here. We would hope anyone who has any kind of involvement regarding these implants, TMJ, or even other failed medical implants find their way here.

Vitek survivors:
For a methodical breakdown of events & names regarding the(IPI )Implants please click here: http://www.aehf.com/articles/A75.htm

 
Please accept our sincere thanks for your time and attention
~ Toni Taylor -Helser   19 May 2013

Simply a Vitek Proplast Reminder; We didn’t go away.

This repost is simply a reminder that we have not gone away, we ares till thriving despite having to negotiate this for the most part on our own. Doctors seeming to still be reluctant to discuss our prognosis. So we keep talking, we keep sharing information.
We’re not going away.
PART ONE

THE NIGHTMARE’S BEGIN……. 

The following are some of the relevant publications, filings, and correspondences in this nightmare.

THE BACKGROUND RESEARCH

April 6, 1938 – Teflon is Discovered

1963 12/28 Lancet CHARNLEY WARNS against the use of TEFLON in JOINTS because of INTENSE FOREIGN-BODY REACTIONS. Describes UNFAVORABLE RESULTS of INJECTING TEFLON into HIS OWN THIGH.

1967 WSJ DUPONT sends HOMSY WARNING about COMPLICATIONS caused by IMPLANTED TEFLON.

1968 WSJ PROPLAST developed by HOMSY at DUPONT.

1969 .First report 1969 silastic used in TMJ joint (popular in their 1970″s) DOW CORNING HAD CONCERNS OF IMPLANTATION IN LOADED JOINTS.

1970 Christensen and Morgan Implants

1970″s Charles HOMSY starts VITEK.

1974 WSJ  Dr KENT started collaboration with HOMSY.

1976 Silastic Sheeting (Dow Corning, Midland, MI)

1976 5/28 FDA MEDICAL DEVICE AMENDMENTS: PREMARKET NOTIFICATION is NOT Required for devices developed prior 5/28/76.

May 28, 1976 -The Medical Device Amendments were enacted giving FDA authority to REGULATE medical devices, such as TMJ implants, which were already on the market.

1976-1983 Medical Device Amendment

1978 3/1/TMJ EARLIEST KNOWN RECIPIENT of VITEK PROPLAST/TEFLON IMPLANT. 1822 3/30 FOI KENT writes HOMSY that procedures TO RISE to 10,000 PER YEAR for TMJ IMPLANTS.

1982, OCT JOMS WOLFORD compares SILASTIC to PROPLAST in 12 patients. Follow-up ranged from one to four years. No differences in comfort, mobility.

PROPLAST HAD BETTER LONG-TERM STABILITY THAN SILASTIC. *****SILASTIC WAS FAILING****

1982, 11/23 FOI VITEK files intent to market INTERPOSITIONAL IMPLANT (IPI) with FDA.

DISTRIBUTION BEGINS

1983 Proplast I (Vitek, Houston, TX)

1983, 3/23 FOI FDA notifies HOMSY that IPI is equivalent to device marketed prior to May 28, 1976.

March 1983 – Vitek, Inc. notified FDA that it was planning to market the Interpositional Implant (IPI) to treat TMJ problems. The firm claimed that it was SUBSTANTIALY equivalent to anEXISTING product, SILICONE SHEETING which was ALSO USED as a TMJ implant. FDA agreed with the manufacturer’s claim of EQUIVALENCE and the IPI device was allowed to be marketed.*

1983-1990 Proplast II (Polytetrafluoroethylene) pre-cut discs

1983 COMMERCIAL DISTRIBUTION of IPI IMPLANTS BEGINS.

1983, 12/9 FOI 510(K) approval for DOW CORNING SILASTIC TMJ IMPLANT H.P. based on  SUBSTANTIAL EQUIVALENCE to SILASTIC SHEETING marketed prior toMay 26, 1976.

1984, 2/14 FOI KENT concerned about SAFETY of Vitek implants, WARNS HOMSY of “CALAMITY OF UNBELIEVABLE PROPORTIONS”

1984 WSJ FIRST ANIMAL dog studies, done on IPI.

1984, July JBJS TULLOS, et. Al. Report 36% of 47 hips coated with PROPLAST FAILED after an average of 37 months. CONCLUDED that coating had INSUFFICIENT STRENGTH to WITHSTAND NORMAL WEIGHT-BEARING LOADS. Dow Corning KNEW this back in the 1970′s and EVEN BEFORE THIS

1985 Proplast IPI inserted in approximately 25,000 to 30,000 patients

GROWING CONCERNS:

1985, TMJI FIRST PROBLEMS with PROPLAST reported by “RYAN”. (“DEGENERATION OF CONDYLES”)

1986, Apr  CONG FIRST Vitek Proplast Medical Device Report!

1986, Apr DCNA MORICONI et. al. “The TMJ IPI’S should be SINGLED OUT as having provided a NEW and MORE PREDICTABLE mode of TMJ RECONSTRUCTION.”

1986, Jul JOMS TIMMIS et. al. REPORT GIANT CELL REACTIONS by rabbits Proplast/Teflon And SILACONE IMPLANTS. “Indicate a NEED FOR FUTHER EVALUATION of theseMATERIALS as DISC REPLACEMENTS IN HUMANS!”

1986 Oct, AAOMSm El DEEB reports 6 monkeys showed PROPLAST FRAGMENTATION with GIANT CELL REACTIONS AFTER 3-12 MONTHS

1986, Oct, WSJ Vitek’s survey of oral surgeons 91.5% of 5,070 satisfactory results. Vitek says prognosis for IPI”S success beyond 3 years UNKNOWN in package insert

1987, 2/20 FOI U.S. Air Force REPORTS PROBLEMS with PROPLAST to VITEK, FDA (“SEVERE

PAINFUL AND NONPAINFUL FOREIGN BODY REACTION WITH RESORPTIONOF CONDYLE AND GLENOID FOSSA”)

1987, Spring  HC FIRST Lawsuit against VITEK

1987 DC WILKES design TMJ IMPLANT marketed by DOW CORNING

SHUTDOWN-THE BUREAUCRACY SWINGS INTO ACTION

1988 FDA FDA became aware of COMPLAINTS about the IPI IMPLANTS and explants showing BONE RESORBTION, IMPLANT FRAGMENTATION, and DELAMINATION.

1988, June WSJ Distribution of IPI SUSPENDED by Vitek

1988, July WSJ FDA conducts FIRST INSPECTION OF VITEK’S PLANT

1989, Mar HC FDA cites Vitek for NOT REPORTING PATIENT COMPLAINTS through Medical Device Reports (MDRs)

1989, May JOMS El DEEB publishes 1986 FINDINGS ON MONKEYS.

1989, Jul, JOMS VALENTINE et. al. 9 PATIENTS (14 JOINTS) showed DETERIORATIONS,

FORIEGN-BODY GIANT CELL REACTION IN ALL JOINTS

1989, Oct, FDA FDA issued a letter to Vitek, Inc., a REGULATORY LETTER for Medical Device reporting (MDR) and Good Manufacturing Practices (GMP) VIOLATIONS!

Dec 1989 OMSC Yih/Merrill report”both silicon rubber and Teflon-Proplast ar not biologically acceptable implant materialsIn the functional TMJ”

1990 Vitek issues safety and cessation of manufacturing

January 26, 1990 – FDA issued a letter to Vitek, Inc. Advising them to WARN all oral surgeons of record against implanting further devices and MONITORING their PATIENTS until further clinical data was evaluated demonstrating long term safety and effectiveness.

Mar 1990 Reports started to surface of problems with Proplast and Silicone

1990, 3/23 FOI Vitek issues letter advising Docs that IPIs could fragment.

March 23, 1990 – Vitek, Inc., issued a “Dear Doctor” letter informing doctors of the hazards associated with the IPI product and advising them to closely monitor all patients by clinical and radiographic examination. FDA classified this action as a voluntary safety alert.

1990, June Oral Surgery Marketing, Inc (OSMI) takes over Vitek products

June 1990 – Vitek, Inc., filed for bankruptcy. Oral Surgery Marketing, Inc. (OSMI) and Novamed, Inc., were created.

July 27, 1990 – FDA issued Vitek, Inc., a letter informing it that its VOLUNTARY SAFETY ALERT WAS INEFFECTIVE. An audit check of the safety alert disclosed that some consignees were never notified. what about the patients)

1992 Congressional Hearings…

Part Two ~ More information

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Teflon-Proplast Implants

by Keith Webster


One of our many correspondents wrote about problems after a Teflon TMJ Implant:
” I had a Teflon implant removed from my TMJ joints in 1987 which had been implanted in 1984. At the time there seemed to be no negative reaction although the surgical report stated foreign body reaction had been observed. Unfortunately I was involved in a car accident complications from which affected the TMJ requiring grafting of rib material to reconstruct the jaw.

My question is: Are there any tests to see if the Teflon residue can be detected in either the tissue removed in the later surgery or even now post surgically (there seem to be some complications in the right joint).”

A TMJ implant, which was made out of a Teflon-Proplast material and used as a meniscus replacement. With hindsight severe degenerative changes occurred in about 90% of cases.

The implant disintegrated under load, producing a foreign body giant cell reaction , subsequent bone erosion and lymphadenopathy. [disease of the lymph nodes]

Vitek withdrew the implant and went into liquidation. The U.S. Food and Drug administration subsequently produced a consensus statement advising the removal of all symptomatic implants and 6 monthly radiographic follow-up of asymptomatic patients.

A foreign body reaction is seen after any implantation of any alloplastic material and is a chronic inflammatory response. (Also called Giant Cell Response) However if the response is low-grade and produces no symptoms then no action is necessary. There are analogies here with the similar response to reactions to implantable silicone breast implants.

Unfortunately the search for a biocompatible TMJ implant has not produced any serious contenders and in the UK and USA.  Most TMJ reconstructions are performed with auto-grafts of cartilage capped rib (costochondral grafts) or new menisci are formed by using interpositional muscle or dermal grafts. The main prosthetic TMJ under consideration in the UK and USA is the Christensen prosthesis composed of a cobalt-chrome articular fossa and a methyl methacrylate condyle replacement attached to a cobalt chrome ascending ramus. However there appear to be no long-term solutions to the multiply operated patient and only about 5% of all patients treated for TMJ disorders undergo open TMJ surgery.


References:

US Food and Drug Administration: FDA Safety Alert. Rockville, MD, US Food and Drug Administration Dec. 28 1990

Kaplan PA, Tu HK, Williams SM. Erosive arthritis of the temporomandibular joint caused by Teflon-Proplast implants: Plain film features. Am J Roentgenol 1988; 151: 337-340

Dolwick MF, Dimitroulis G. Is there a role for temporomandibular joint surgery? Br J Oral Maxillofac Surg 1994; 32: 307-313.


“To answer the question whether tests could detect traces of Teflon, yes, a biopsy of the joint area might show microscopic bits of Teflon. However, it is not clear what the results could mean. It would be quite difficult to remove all particles of Teflon when removing an implant. Many patients who have had Teflon implants removed are now showing signs of foreign body reaction, and traces of Teflon surely remain. Teflon implants are used successfully in other parts of the body – in places not subjected to heavy stress – indicating that Teflon itself may not be harmful.

In general, patients who undergo TMJ surgery are rarely pain -free and seldom experience a complete resolution of TMJ symptoms They usually have some continued complications. Armed with this knowledge, patients with mild or minimal TMJ symptoms can avoid wasting time and money seeking a medical ‘cure’ which probably does not exist. Instead, concentrate on changing behavior patterns or bad habits like bruxing, clenching, chewing gum, etc.

Teflon-coated TMJ implants were manufactured exclusively by the Vitek Corporation beginning in 1973 until the company folded about 1993. The U.S. Public Health Service sent warning letters to 20,000 people who received Vitek implants. Symptoms of TMJ implant breakdown include;

  • pain radiating from around the ear
  • limited lower jaw movement
  • joint noise
  • change in occlusion (bite)
  • difficulty chewing
  • headaches

Concerned patients in the US may call Medic Alert, a non-profit foundation, telephone 800-554-5297, for further information about where to find TMJ support groups. The U.S. Food & Drug Administration has information about TMJ implants, telephone 301-443-4190 or 301-443-3170.”

Submitted by Robert B. Stevenson, DDS, MS
Columbus, Ohio
gold2ooth@aol.com

Further contributions on this subject are invited.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
And Baroness Says: 

If you are reading this because you have been diagnosed (d/x) with TMJ disease  and received TM Jaw Implants please feel free to contact me with any questions or comments.

Let me tell you this now; If I had to do it over again and I had the hindsight of the information I carry today; I WOULD NOT HAVE SURGERY with man-made foreign material implants.

IF, and I say if you have bone on bone in the joint(s) then possibly a surgical reconstruction of the disintegrated cartilage might be considered to repair so to alleviate pain, improve range of motion,  and to maybe hamper bone erosion.  But the only way I would go in to it today would  be armed with the knowledge I have now that only an auto-graft from ones own body is the way to go.

What I HAVE  NOW. Harvested from somewhere else on your body (mine is  cartilage from the backs of my ears & hips in my second surgery).

If you do not have any degeneration of the joint and a doctor is recommending surgery I would run as fast I could to the closest exit. It a doctor is diagnosing you with such, I highly recommend that you demand the films, take them with you for a second opinion. Even maybe a third.
Today, 2014:

Today after over 30 years of research and study concerning TMJ disease and talking with other people afflicted the popular treatment modality today is to wait it out. There are many things that can be mastered to help cope and alleviate the pain and spasms.

Please just don’t be ready to jump when surgery is offered. I know how tempting the promise of no pain can be. But it is never NO More Pain. It can make things much worse even though today the implants that have caused so much destruction are no longer marketed in the USA there is still a risk with any surgery.

There are still medical implants being used every day. They are also being recalled by the FDA every day. Not much has changed.in 30 yrs.

Again, Thank you so much for your time, and your attention.

An Open (loving) Letter

 

Originally written 2008.

Re-posted 08.15.2013 by request for Wendy my Wingnut Friend )

* A hopeful loving letter to those (happily) who are not living with Intractable Pain/Chronic Pain and have no idea what it is like. i.e. Giant Cell Response, Fibromyalgia, Lupus, Arthritis and so many others.

tolerance400

Dear Family and Loved Ones;

I have been hoping for years that you would all be able to understand the over-lapping illnesses I have that as a result of create a life  lived in chronic pain and fatigue. Maybe even along with myself you might help advocate for more research and more education.

It can start here. It can start with just you & me.

I will use the diagnosis  of Fibromyalgia as my basis of reference because it is more commonly heard about, but please understand what I write here can be said for a number of diagnosis/diseases. It’s more about how I navigate life that I’m hoping you will have a clearer picture of, and why.

Fibromyalgia: This diagnosis, this explanation for the chronic wide-spread pain and tenderness isn’t all in my head, and it isn’t contagious

Is it terminal? Nobody I’m aware of ever died just from Fibromyalgia alone (though they might have wished they could on really awful days)  There must be something said about the school of reality that some people can and do die from mismanaged severe chronic Intractable Pain. If you want to read articles or books about Fibromyalgia and/or Chronic intractable I can share with you some that I think are fabulous.

Learning about this is definitely a process.

The first step in this process is for you to believe that there is an illness called Fibromyalgia. And that I have it. I know that might baffle some people that I suggest that some don’t believe it. It’s true that most of you do, but there are still some doubting Thomas’ out there. This is for you:

Fibromyalgia is a high maintenance condition with lots of different kinds of symptoms. Too many to discuss here.There’s no way to just take a pill to make it go away, even for a little while. No way to exercise it away. I have tried. Sometimes a certain medication can make some of my symptoms more bearable. Sometimes I can have an adverse hyper sensitivity to a drug and that can cause a whole new set of issues. Other times I may take a lot of medication and still won’t feel any better.That’s just the way it goes. I can’t control how often I feel good or when it is I’m going to feel terrible. I do what I know works, I can have really awesome good days, even months at a time. Today after close to 30 years of learning how I manage it, but there are days it wins.

Lots of well-meaning friends cut new drugs advertisements out of magazines for me,  and I do appreciate the thoughts, but I look at the list of side effects and the few symptoms they may help to make my choices. No matter how happy the people in the pictures look, there’s still no miracle drug available. Not for me. Not for most people living with CP/IP, regardless of its origins.

If I am functioning normally for me, I am having a great day. I may have saved up for it.This doesn’t mean I’m getting better — I suffer from chronic pain and fatigue for which there is no cure. As I said I can have good days, several good days, weeks, months, and even a few good years. But a good morning can suddenly turn into a terrible afternoon. I get this feeling like someone has suddenly pulled out the plug to my energy source and all my energy has just run out of my body. Think the Energizer Bunny who has suddenly wound down. I often refer to feeling like I have been hit by a Mack Truck when my pain levels spike beyond any kind of relief I am able to access.

I might get more irritable before these flares, suddenly get more sensitive to noise, or just collapse from deadening fatigue and frightening pain. Weather changes can have a big effect on how I feel. Temperature extremes can have an effect. Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this may be likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and for this I am sorry. This may be one of the hardest things for me to contend with. The sadness I feel for what my illnesses do to those around me is more than I can easily describe, or often bare. I am no longer that fun-loving person — and it hurts me that I am no longer who I once was.

Fibromyalgiacs have a different kind of pain that is hard to treat. It is not caused by inflammation like from an injury. It is believed that it comes from the central nervous system in our brain, short circuiting. But even in 2008 little is still known. It is not a constant ache in one place like a broken bone. It moves around the body daily, hourly, and changes in severity and type. Sometimes it is dull, and sometimes it is cramping or prickly. Sometimes it burns. Sometimes its jabbing and excruciating. If Eskimos have a hundred words for snow, Fibromyalgiacs have hundreds words for pain.

Sometimes I just hurt all over like I’ve been beaten up or run over by that Mack Truck. Sometimes I feel too tired to even lift up my head. Besides pain, I have muscle stiffness which is worse in the morning and evenings, mornings being the roughest time for me. Sometimes when I get up out of a chair I feel like I am ninety years old. I’m creaky, and I’m klutzy. I trip over things no one else can see, I fall up stairs. I bump into the person I am walking with. I regularly drop and spill things because my fingers are stiff and my coordination is off.

I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall. When there’s no railing to hold on to, it’s terrifying. I’ll wait until I can no longer if that is where the restroom is if there is no railing.

I am always pushing myself, and sometimes I just push myself too hard. Always trying to make up for what I feel I am lacking in my productivity in life. When I do this, I pay the price. Sometimes I summon the strength to do something special but I will usually have to rest for a few days before & afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to, and sometimes I choose to.

I know it’s hard for you to understand why I can do one thing and not another. It’s important for me that you trust me about this. My limitations like my pain and my other symptoms are invisible, but I know my way around my limitations when present. Another symptom I have is problems with memory and concentration which with Fibromyalgia has been termed Fibro-fog. Short-term memory is the worst,  I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands which I write-up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them or forget the notes. I may be holding a conversation with you one minute just fine and the next look like a deer caught in head lights because I forgot what we were discussing. Don’t worry, this is normal for Fibromyalgia. Most of us are frightened that we are getting Alzheimer’s and new kinds of brain scans have actually documented differences in our brains, albeit thankfully not Alzheimer’s.

I mentioned my sensitivities earlier and I need to talk about them in more detail. It’s more like an intolerance to things.

Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish, some chemicals, fragrances or perfume can give me headaches and make me nauseated. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t so at all. These things make me physically ill.

Sometimes I just need to get away from what ever it is that is causing my reaction. I just don’t know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or even go home. That’s really all right with me, but I worry about the people I have left behind.

I’m shy about others seeing me in pain and often need to be alone. You may remember me as a light-heated. I don’t want or need you to give up doing what’s important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be.

I have problems sleeping. Sometimes I am unable to get to sleep at all, and other times I get really restless sleep, wake up and can’t get back to sleep. Other times I fall into bed and sleep for fourteen hours at a time and will still be feel exhausted upon waking. Some nights I’ll toss and turn and not be able to sleep at all. Every little thing will keep me awake.

With FIBROMYALGIA there are other symptoms and health issues- TMJ Disease, migraines, irritable bowel, chronic muscle spasms, restless leg syndrome, pelvic pain, not to mention the problems with cervical spine disease that will take their toll on our friendship.

Some of these symptoms are embarrassing and hard to hear about,  It’s very hard for me too say these thing but because I love you and I want to spend time with you I want to try to help you understand.

I have made a promise to myself and now I am making it to you: I will try to set aside time when we can have a cup of tea, a chat or two. During that time we will not talk about my illness.Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our friendship even stronger.

I am most grateful for your time and attention. I’d like to think you will be sharing this letter with your family and loved ones. I believe that more we know about each other the better we can all get along, in every aspects of our world.

Always in my heart,

~ Barefoot

” Life is short, Break the rules, Forgive quickly, Kiss slowly, Love truly and tenderly, Laugh uncontrollably, And never regret anything that made you smile.”

 

ttaylor2008