Well, my implants were removed 8 weeks! Surgery went well. I didn't have the tmj implants, mine were cheeks. C reactive protein is down 50%!
October 10, 2015
Letter to People Without Chronic Pain
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours, too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…”
Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you – people who are not sick. I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
AUTHOR UNKNOWN
*********************************
TIPS FOR DEALING WITH PEOPLE IN PAIN
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.
October 7, 2015
Joey Williams
Here's Joey Williams inspirational story.
Hi Brenda / hope your doing well / they have cut me 4 times an each time the teflon proplast had failed / last time tbey put n stainless some many yrs back / u can see the screw heads n xray /it stays swollen an pain is daily / I was told an husband when they put n stainlesss the propkast was n uncountable small pieces an n my brain an n bloodstream / they even cut my jugular / iv had giant cell tumors n my breast - my knee twice / the woese is when one came up many yrs back n my gum an I lost all my top teeth one at a time going daily to oral surg.
Who didn't believe n more than one pain pill a day tho he was going as deep as possible removing pieces of proplast said he couldn't believe it was so painful / my husband came n the room with me saw how I was being treated an was there to speak for me / to make things worse iv had over 25 plus major operations due to growths / complete menapause by 22 couldn't take hormones would throw pulmonary to lung end up n icu r ccu / so I'm eat up n spine with osteo an rheumatoid arth. / they took bone from my hip to rebuild lumbar to no avail / now its from top to bottom / both knees most all joints / I have big knots on my finger joints an one knee an toes / they said I could stand up an a bone coild break that was over ten yrs ago.
They said my internal organs r that of a person 20 yrs older as they have zipped me open navel allthe way down about 15 times/ I had to learn to catherize myself an retrain my bladder / so many more things due to proplast / my sight has been effected my one ear closes up when joint swells an i can't hear / headaches last for days with dry heaves / iv had part of intestines removed as they were perforated an I had a duodenum ulcer an bleed out 2 pints an almost died / iv had 2 major strokes as I went to bed normal each time woke up knew no one couldn't eat by myself r walk / but I fought hard as I'm ambidextrous an they believed
It made a huge diff. An I'm very stubborn / Brenda I read the dictionary entirely played tv hand games for coordination / before my strokes I rode my bike 10 miles a day as difficult as it was / I can't do it anymore but I set my mind to find other things / I made it thru two very long hard strokes / 2 yrs ago Christmas day I had a heart attack but I made it thru again / Brenda if u have any doubts of my history I have documented papers I have to carry for emergency reasons / there is much more but I won't bore u anymore (lol) // iv been married 45 yrs had 3 very healthy kids / I lost my first born my son a yr ago this past aug. / he was healthy his entire life had a bump come up on his neck / went to Dr. N days he was told he had a rare fast moving cancer an it had already spread from his head to toes an no meds to treat it 6 mo.
Later he was Gods angel /my oldest daughter was diagnosed with lupus the day b for my son was told he was dying / she has to retire as she has put n 20 plus yrs n military / did her time n Iraq / at one time she wss Deputy Commander for state of Tx. N homeland security / on top of raising 5 children which 3 r adults now with 2 grandkids an her an husband got real estate lis. An started their real estate co. Which they had to give up due to her health / lupus has hit her hard / my son also joined military as they were so close n age he graduated an waited till she graduated the following yr so they joined military together / my son left 2 children a daughter that's grown an a son 12.
Anyway Brenda I have refused to give up with much pain every day so I started rescuing animals about 12 yrs ago as I love them all an someone has to speak an care on their behalf / iv learned to give iv's - shots an so much more an my reward has been being able to show them love an the love they give back is priceless / I have no living relatives no brothers r sisters aunts r uncles / my husband other than my daughter with lupus is my family / but Brenda my inner strength all these yrs who has never left me down / has shown me what direction to go when iv lost all hope an didn't think I could stand another day of pain mental an physically has ALWAYS ALWAYS been GOD !!
There is much more of events that impacted my life like the loss of my home of 30 yrs / a hurricane a major car wreck which started my first tef/proplast implant due to a kid on drugs running a red lite pinning me in / all which forced us to starting from ground zero / I believe There is ALWAYS something to learn no matter how bad r negative the situation an if you put ur faith in GOD no matter the situation r how bad the pain GOD will give you ALL the strength you need an I'm honestly living proof // I hope I haven't bored you with a brief synopsis of my life but my reason is my sharing may help anyone to seek faith an trust in GOD every day an to NEVER give up r lose the direction that the light is shining on especially if it seems its shine has gone behind the clouds temporally as that's the key its temporary the light is still there / I'll remember you n my prayers Brenda an I'm always here if you need an ear Sincerely m.j.williams
She left a comment on one of my posts: http://bren-s-way.blogspot.com/2015/06/balcony-2015.html. I will be remembering her in my prayers.
Hi Brenda / hope your doing well / they have cut me 4 times an each time the teflon proplast had failed / last time tbey put n stainless some many yrs back / u can see the screw heads n xray /it stays swollen an pain is daily / I was told an husband when they put n stainlesss the propkast was n uncountable small pieces an n my brain an n bloodstream / they even cut my jugular / iv had giant cell tumors n my breast - my knee twice / the woese is when one came up many yrs back n my gum an I lost all my top teeth one at a time going daily to oral surg.
Who didn't believe n more than one pain pill a day tho he was going as deep as possible removing pieces of proplast said he couldn't believe it was so painful / my husband came n the room with me saw how I was being treated an was there to speak for me / to make things worse iv had over 25 plus major operations due to growths / complete menapause by 22 couldn't take hormones would throw pulmonary to lung end up n icu r ccu / so I'm eat up n spine with osteo an rheumatoid arth. / they took bone from my hip to rebuild lumbar to no avail / now its from top to bottom / both knees most all joints / I have big knots on my finger joints an one knee an toes / they said I could stand up an a bone coild break that was over ten yrs ago.
They said my internal organs r that of a person 20 yrs older as they have zipped me open navel allthe way down about 15 times/ I had to learn to catherize myself an retrain my bladder / so many more things due to proplast / my sight has been effected my one ear closes up when joint swells an i can't hear / headaches last for days with dry heaves / iv had part of intestines removed as they were perforated an I had a duodenum ulcer an bleed out 2 pints an almost died / iv had 2 major strokes as I went to bed normal each time woke up knew no one couldn't eat by myself r walk / but I fought hard as I'm ambidextrous an they believed
It made a huge diff. An I'm very stubborn / Brenda I read the dictionary entirely played tv hand games for coordination / before my strokes I rode my bike 10 miles a day as difficult as it was / I can't do it anymore but I set my mind to find other things / I made it thru two very long hard strokes / 2 yrs ago Christmas day I had a heart attack but I made it thru again / Brenda if u have any doubts of my history I have documented papers I have to carry for emergency reasons / there is much more but I won't bore u anymore (lol) // iv been married 45 yrs had 3 very healthy kids / I lost my first born my son a yr ago this past aug. / he was healthy his entire life had a bump come up on his neck / went to Dr. N days he was told he had a rare fast moving cancer an it had already spread from his head to toes an no meds to treat it 6 mo.
Later he was Gods angel /my oldest daughter was diagnosed with lupus the day b for my son was told he was dying / she has to retire as she has put n 20 plus yrs n military / did her time n Iraq / at one time she wss Deputy Commander for state of Tx. N homeland security / on top of raising 5 children which 3 r adults now with 2 grandkids an her an husband got real estate lis. An started their real estate co. Which they had to give up due to her health / lupus has hit her hard / my son also joined military as they were so close n age he graduated an waited till she graduated the following yr so they joined military together / my son left 2 children a daughter that's grown an a son 12.
Anyway Brenda I have refused to give up with much pain every day so I started rescuing animals about 12 yrs ago as I love them all an someone has to speak an care on their behalf / iv learned to give iv's - shots an so much more an my reward has been being able to show them love an the love they give back is priceless / I have no living relatives no brothers r sisters aunts r uncles / my husband other than my daughter with lupus is my family / but Brenda my inner strength all these yrs who has never left me down / has shown me what direction to go when iv lost all hope an didn't think I could stand another day of pain mental an physically has ALWAYS ALWAYS been GOD !!
There is much more of events that impacted my life like the loss of my home of 30 yrs / a hurricane a major car wreck which started my first tef/proplast implant due to a kid on drugs running a red lite pinning me in / all which forced us to starting from ground zero / I believe There is ALWAYS something to learn no matter how bad r negative the situation an if you put ur faith in GOD no matter the situation r how bad the pain GOD will give you ALL the strength you need an I'm honestly living proof // I hope I haven't bored you with a brief synopsis of my life but my reason is my sharing may help anyone to seek faith an trust in GOD every day an to NEVER give up r lose the direction that the light is shining on especially if it seems its shine has gone behind the clouds temporally as that's the key its temporary the light is still there / I'll remember you n my prayers Brenda an I'm always here if you need an ear Sincerely m.j.williams
She left a comment on one of my posts: http://bren-s-way.blogspot.com/2015/06/balcony-2015.html. I will be remembering her in my prayers.
July 30, 2015
Angelia Siegmann
I am a "not so healthy" survivor of the vitek implants. I had these implants implanted in the mid 80's and had them removed in the mid 90's. I was wondering if anybody else suffers from other health problems due to having had these implants and if so could you please elaborate.
July 9, 2015
Shannon Belton
I see most people had the TMJ implants, Proplast was placed during my jaw surgery as cheek implants and now they are failing. Anyone else have the Proplast anywhere except the joint?
January 7, 2015
William Rea MD
When I lived in the Dallas area I had the privilege of seeing William Rea MD, FACS, FAAEM. He has diagnosed and treated many patients with TMJ implants, as well as, published in the Medical Journals about his treatment. The first implants were done in Texas so there was a large concentration of patients in the area. Of course, he has had patients come from around the states and the world for his diagnoses and treatments. I made an appointment after reading the research article written by him and Deborah N. Baird. After various tests he diagnosed me with "Toxic encephalopathy, immune deregulation, autonomic nervous system dysfunction, and multiple chemical sensitivities."
"Fourteen patients with temporomandibular joint (TMJ) alloplastic implants who exhibit chronic signs and symptoms of chemical sensitivity are discussed. These patients were well before their implantation. Memory loss, confusion, imbalance, dizziness, non-immune vasculitis, petechiae, spontaneous bruising, edema, Raynaud's phenomenon, pain and autoimmune dysfunction are some of the symptoms and signs seen. Laboratory data show immunological abnormalities, including positive autoantibodies and altered T and B lymphocyte function. Provocation skin testing shows reaction to their implant material. The symptoms of patients with jaw implants are similar to those patients who experience complications from their breast implants. Similar abnormalities are seen with SPECT brain scan, in the autonomic nervous system, as well as laboratory data. All patients were sensitive to a wide variety of substances including toxic and in some cases to non-toxic chemicals (foods, pollens and molds). These same parameters were also similar in the patient with a known toxic chemical exposure without implants. A comparative discussion of the different parameters in all three types of patient is presented. A successful therapeutic intervention was developed using a massive pollutant avoidance program, nutritional supplementation and injection therapy for biological inhalants, foods and some chemicals. When indicated, intravenous therapy with antioxidants and heat depuration was added to their treatment regimen." Baird, D.N., &Rea, W.J. (1999). The Temporomandibular Joint Implant Controversy. Part II: Its Clinical Implications. Journal of Nutritional and Environmental Medicine, Volume 9 (no.3), pp. 209-222.
I would like to note that the breast implants were never recalled by the FDA. The Vitek implant was recalled by the FDA because of "catastrophic devastation." The FDA Enforcement Report has stated "Debris in the joint from the implants can contribute to progressive bone degeneration of the condyle of the mandible and/or glenoid fossa and to foreign body responses which could start at this area and be carried throughout the immune system." http://www.fda.gov/bbs/topics/ENFORCE/ENF00033.html [This page has been removed from the FDA website]
"Fourteen patients with temporomandibular joint (TMJ) alloplastic implants who exhibit chronic signs and symptoms of chemical sensitivity are discussed. These patients were well before their implantation. Memory loss, confusion, imbalance, dizziness, non-immune vasculitis, petechiae, spontaneous bruising, edema, Raynaud's phenomenon, pain and autoimmune dysfunction are some of the symptoms and signs seen. Laboratory data show immunological abnormalities, including positive autoantibodies and altered T and B lymphocyte function. Provocation skin testing shows reaction to their implant material. The symptoms of patients with jaw implants are similar to those patients who experience complications from their breast implants. Similar abnormalities are seen with SPECT brain scan, in the autonomic nervous system, as well as laboratory data. All patients were sensitive to a wide variety of substances including toxic and in some cases to non-toxic chemicals (foods, pollens and molds). These same parameters were also similar in the patient with a known toxic chemical exposure without implants. A comparative discussion of the different parameters in all three types of patient is presented. A successful therapeutic intervention was developed using a massive pollutant avoidance program, nutritional supplementation and injection therapy for biological inhalants, foods and some chemicals. When indicated, intravenous therapy with antioxidants and heat depuration was added to their treatment regimen." Baird, D.N., &Rea, W.J. (1999). The Temporomandibular Joint Implant Controversy. Part II: Its Clinical Implications. Journal of Nutritional and Environmental Medicine, Volume 9 (no.3), pp. 209-222.
I would like to note that the breast implants were never recalled by the FDA. The Vitek implant was recalled by the FDA because of "catastrophic devastation." The FDA Enforcement Report has stated "Debris in the joint from the implants can contribute to progressive bone degeneration of the condyle of the mandible and/or glenoid fossa and to foreign body responses which could start at this area and be carried throughout the immune system." http://www.fda.gov/bbs/topics/ENFORCE/ENF00033.html [This page has been removed from the FDA website]
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