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