* LIFE TIME CHANGES *
My 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, KNOCKED OUT, my mouth was stretched & lodged open much farther than a 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 could 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 with as I had no history(h/x) of head aches beyond the occasional pre-menstrual H/A.
After a very long story that I will cut much shorter; I was diagnosed (D/X) with TMJ (Temporal Mandibular Joint) disease. The cartridge between my upper & lower jaw bones, in the joints, had degenerated completely bi-laterally.
Hmm…..( remember; no prior H/X of headaches or problem with opening my mouth) Remember long story cut short: The next step after 2 yrs of unrelenting head, face, ear, neck and shoulder pain was to have surgery to correct the issue of the “bone on bone rubbing” by implanting a small fashioned piece of plastic to replace my cartilage that had degenerated away. The implants were made from Teflon & Silastic by a company called Vitek. The implants were called Vitek Proplast 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 with my husband after work the night before my scheduled surgery just for the intention os knocking me out Asleep by sedation to see if once I was completely relaxed if my mouth would open any further than while awake. 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. My dear & devoted husband stayed in the room with us.. All I remember is talking, the syringe with the sedation, and the next thing I am asking when is the doctor going to be done. I had things to get done at home. My stay in the hospital was expected to be 5 to possibly 7 days. The result of this strange test was that my mouth would not open any further than when I was awake.
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 other 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 patient 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 ironically our local newspaper and the FDA did have the answer to why I and millions of others like me were not getting better, and in some cases worse than before the surgery. Which made no sense until this announcement was made in the newspaper. In the form of a tiny two-inch paragraph buried in the back pages of Sunday newspaper was our answer. Finally!
My implants were recalled by the FDA
Due to an extreme high rate a fragmentation the implants were being recalled right and left in the USA. A lot was soon discovered that the those in the know had information all along that this medical device was not intended to be used in humans, and if so that there was a very high rate of failure. Those warning were ignored. And because of it in 1986 I had the Arthoplasty surgery in both joints using the Vitek implants with high hopes of moving on with life post op.
No such Luck~
The life changes for me and my family have begun…..
In 1991, seven years now of chronic pain and fatigue that I thought first a haw surgery was going to help only in the end hurt matters worse. After the reading about the recall (in 1990) it was highly recommended that I have the implants removed. Or what was left of them. After x-rays, Tomograms and Panavues that showed there was no doubt that my implants had failed. Who knows when they began to fragment? I had another surgery, with a different surgeon to remove the implants, but lo & behold mine had completely fragmented! This would have been seen on any films I had taken prior to the discovery images the new surgeon ordered, but there were not any. My complaints from 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 fashioned it into the shape of the prior implants, They were then grafted to my upper & lower jaw bones. 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 Teflon & Silastic are trying to be absorbed byyour bodies or to make waste of it. Neither of these things are possible and are not happening so the two intruders are then causing rejection. A Giant Cell Reaction or Response begins when the immune system starts to find the intruders. It 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 there for both 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 need to test me for Lupus. I show all the signs, all the symptoms. But for now (2012) I am happy to be able to state that no Lupus D/X has been added to my long list in my chart notes.
Because of the Giant Cell reaction the degenerative bone disease that apparently created the TMJ disease issue in the first place continues. In 1997 I had to have all my teeth (what was left of them) removed via 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 began. The bone loss was so prevalent that my tooth roots and nerves had nothing to hang on to. New bone from my hip was grafted and added to 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 this newest procedures was being done to remove the unhealthy teeth tissue, and to give me a cosmetic update. One that let me smile. But the new teeth would not guarantee that I was going to be able to eat. My new dentures would give me a pretty smile again but would do little to correct my jaw health.
How they were so wrong about not being able to eat with my new teeth. 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 this was a gift. My new teeth were just what they had 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’d always hated what to me looked like two big rabbit teeth,, right in front. I had a bit of an over bite as a kid and two larger front teeth gave room for name calling. Bucky Beaver was the popular one of my day.So I was more than pleased with how they looked, and how they fit than if I could chew with them. I am in no way advocating for dentures. Trust me it was not a ball of fun. I have been one of the very rare and fortunate ones that not only had great professionals working with me and luck was on my side this time. The dentures they said were only for cosmetic purposes and that I’d probably not be able to eat with them. I was so ecstatic that I could actually chew with them right away. It took a bit of time to learn how to talk with them and to eat with them, but I am able to eat things that people with a full mouth of their own natural teeth are not. I am blessed for sure.
In 2000 I finally relented to having neck surgery, 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 everyday 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. 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!
We had a long talk…several long talks…. he filled my arms with research materials and studies,….gave me web sites to do my own 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 is the procedure to be done. That I could put my trust in to the powers, talents and skills that God helped my surgeons gain 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 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 cigarettes! 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 because of the 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, 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 knees, R. ankle, right thumb and forefinger along with my 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.
Since then I have been diagnosed also with spinal stenosis, spondyilosis, chronic insomnia, bursitis of both hips, arthritis of knees, R. ankle, right thumb and forefinger along with my 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.
From head to toe as my pain doctor’s refers to me. ~
But I am still woman; Hear me roar!
Though the medical world is still very much out to lunch on the cause of Fibromyalgia (FM) I am confident as so may studies show that it has to do with the central, sympathetic and para-sympathetic nervous systems. Has to do with our brains. I know my brain is hard-wired wrong or maybe different, and I am convinced along with the people who are doing the R & D on FM, and Chronic Pain, that pain short circuited my nervous system somehow, and once that happened my ability to tolerate pain, noise, light, smells, large groups of people, any outside stimuli has been the drastic results of an illness born into my world.
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. That much control over it all I DO have.
And 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.
If that cannot happen, and instead others are finding their way here simply because they too have walked into the huge room of chronic pain & fatigue my desire is to help calm the waters some.
My hopes and desires then turn to try to reach them in time to be able to help provide tools and tips that may help shorten the long journey into searching for ways to cope, Directions to the roads traveled on before by others like us that can provide the shortest routes to living with pain everyday.
Finding ways to have a life again, albeit a different one than you knew before.
Begin first with acceptance~
©tjhelser2012
Wow!! Ok I too had the implants removed after they were recalled. I advised the hospital that I wanted the implants after they removed them in the event there would be a huge falling out. Just before I was discharged I asked for the implants and low and behold, the hospital had lost them. YES! I have had a total number of 30 surgeries on both rt and lt TMJS. I had a total joint system placed in both joints only to find out that I was allergic to the chromium and Nickel in them. The FDA approved TMJ Concepts to make a total titanium joint just for me….another 9 hour surgery followed by radiation treatment to cut down on the scarring I was so prone to having. I have been to Mayo Clinic and all over the place as I continued the long process of diagnosis. In the past year a Growth in my left parotid gland appeared and they now feel I have Sjogren’s disease secondary to the Lupus they think is underlying. The odd thing is that after the implants were removed I continued to have issues related to that of many connective tissue/autoimmune disorders. I have had the second set of Titanium Joints for about 10 years now. I have had two additional surgeries to clear up scar tissue that had formed. I have sever dry eye and mouth which led to the diagnosis of Sjogrens disease. I personally feel and many of you would agree that this horrible substance that is in our system is still and may always be there. We may never know. I had a hysterectomy about 3 years after the proplast implants and my body rejected the sutures placed 6 months after my surgery. My body is in a constant battle with itself as it appears many of you as well. So where do we go from here? I personally would love to organize a “chat” session where we could talk and compare notes. It’s just nice to know that we aren’t losing our minds and that while we are led to believe that it is all “in our heads”, we can have comfort in knowing that yes it WAS in our heads and now has moved throughout our entire bodies.
FYI the last I heard was that the owner of VITEK is in Europe and could not even attend his sons funeral here in the states as he would have been arrested the minute he stepped foot in the US. Hang in there everyone!!! At least we are not alone!!! Christine…
what are the side effects 28 years of teflon implants? a phyciatrist told me teflon isnt poison and i should get over it !
Auto-immune issues, Lupus, Giant cell Reaction, to name a few. I would be looking for a new psychiatrist, One that validates your feelings at least
I cannot believe all you have been through BB, medical practitioners have so much to answer for but rarely do. Your indomitable spirit shines brightly in spite of all the suffering you have endured.
Hello my SA friend,
I have neen thinking about you optie. Thank you my dear friend for your sweet words of support.
You know.. I made the choice a long time ago that this would not be who I was identified by. It pleases me to know that this has held true.
I feel such a great connection with you and want to thank you for this.
God Bless you my dear friend opie,
You are such a gift to this blogging world and to me. Thank you!
i made a choice a long time ago that Ii would not be defined by what wa swrong with my body. My mind and my spirit are intact. Just how I want to be thought of, not an illness or condition. I think I have more to offer the world.
And I refuse to be beat down by anyone, especially a doctor by the name of Charles Homsey.
Thank again my friend.
What you have been through and still you shine – you are amazing!
You always manage to things to me Jules which lift me, thank you my friend! You are so kind.
Its not just me who had this happen to. I find it rather appalling what can be done under the name medicine and yet cause so much damage. These implants should never have been placed in humans,and definitely not in load bearing joints like the Temporal Mandibular Joints,
Our USA Federal Drug Administration did not protect us at all. ~ Thanks for your continued support.
Reblogged this on FullCircledMe and commented:
This piece written on Lady Barefoot Baroness originally because this blog FullCircledMe had not been created. Now that it has I hope to move all chronic illness posts to here at FullCircledMe
i had 2 titiaum jaw joint replacements in 2011 i had teflon disc implants in 1983 they were recalled in 1991 i was 1 the unlucky 1s that didnt find out for 28 yrs i had no jaw joints my lower jaw was togather by muscels i have 26 screws holding the implants in a hole in the base my scull repaired i just had a counclor tell me i need to get over my anixety, ptsd,i cant work this has changed everything about me
I am so touched that you found my post and that you have reached out to me. I have been looking for people like you for 29 yrs.
I understand what you say about this changing your whole life. Mine has not been the same since and I consider myself one of the lucky ones two discovered the FDA’s recall and I had what was left of my fragmented implants removed. problem being there is all that foreign material our bodies are trying to absorb. Hence Giant reaction Response.
I would love to stay in touch/ I would like to have an informal support group for us, those who have been damaged by Charles Homsey and the FDA as well They approved the implants under erroneous approval processing.
Please come back and or to my n blog Barefoot Baroness. I’d love to talk more.
thank you for your story!!!! Im going through the same thing. I had my vitek implants in for 23yrs and almost died. now im just tryin to deal with one medical problem at a time. but its hard because no one understands.
Are you telling me that the implants were implanted for 23 years? Oh God. I am so sorry. Where was your original sureon if you do not mind me asking>
And were you beiing monitored after the recall in 1990?
I don’t even know what to say. God. I am sitting here trying to absorb this. Mine were intra-TM’s for just 5 yrs almost exactly. I am now saying Just 5yrs.
I do understand, I know what you are dealing with.
Have you been tested for your SED rate,, ANA, & Lupus? I also just found out tonight, oh God, I am sorry. I am just in shock. Anyway we all should be tested for Lyme too. I was just trying to find the message. When I do I will let you know. I am going to your bloig now so i can follow you.
Promise to stay in touch okay. I have been trying to find other victims to create a village with. You are my first,
Take care ~ BB
stormhuntr I am unale to folow you. No link from your blog name to you. Stay in touch!
You sure have been through the proverbial wringer my Dear Twin. Thanks for documenting it here so I have a better vision of what you’ve been through and continue to trudge through hoping for some relief….God’s Speed~
My dearest Twin. How I find this a month later is beyond me. But I did.
Thank you always for your support. It helps me too knowing it’s documented in one place for certain. Aside from legal documents pertaining to the class action law suits.
I love you lady!