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Old 09-11-2003, 02:27 AM   #1
Senior Veteran
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Location: Alabama
Posts: 1,021
Cymy Sue HB User
Talking Telling our Stories......Asking for Support

We may now have a starting point to do some of the things we've been discussing. One site with a lot of information that is very important to all of us.

The site has a place where you can find your Representative in Congress for your state.

Also, Oprah is having a show about Medical mishaps and Surgical mistakes. It's not all about TMJD, but The TMJ Assoc. is asking all patients who have had bad surgeries and problems from treatments to respond.

Posting of this site has been approved by Moderator1.

Cymy Sue

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Old 09-11-2003, 11:54 AM   #2
Join Date: Nov 2000
Location: Montana
Posts: 407
Elaine HB User

Here is a letter you can copy and paste to your congressman. I have already sent mine. Hope it does some good, lord knows nothing else has.

Dear Sir:

We are seeking your assistance to help thousands of our fellow TMJ
sufferers that have been dealt a terrible injustice. The issue that we
bring to your attention is a serious one. We ask that you sponsor a bill
to provide funding:

1) to remove the TMJ implants, and then

2) to provide medically necessary post-implant treatment, including pain
treatment, and to

3) direct the NIH to provide funds for research into the craniofacial and
systemic problems resulting from TMJ implants.

This concerns a condition called "Temporomandibular Joint Diseases and
Disorders," commonly referred to as TMJD. According to the National
Institute of Health, over ten million Americans suffer from TMJ
Disease/Disorders. Both males and females can get TMJ disease/disorders,
however 90% are women between puberty and menopause. According to the
National Institute of Health, "Temporomandibular Joint Diseases and
Disorders (TMJ) refer to a collection of medical and dental conditions
affecting the temporomandibular joint and/or the muscles of mastication
(chewing muscles), as well as related tissue components." The TMJs are the
two tiny joints in the front of the ears that attach the lower jaw
(mandible) to the skull (fossa). Not only do the jaw joints rotate as
other ball-and-socket joints, they translate (move down and forward). The
disc is a wafer-thin piece of tissue acting as a buffer between the skull
and the condyle (top of the mandible). When intact, they are the only
joints in the human body that work together as a unit. These joints allow
us to perform such functions as opening and closing the mouth, chewing,
swallowing, breathing, kissing, talking, etc., all things that people with
healthy TMJs take for granted. Problems that can occur with the
temporomandibular joint are arthritis, trauma, tumors, tearing or
dislocation of the disc. TMJ diseases/disorders runs the gamut from a
clicking or popping jaw and mild discomfort to complete jaw dysfunction
and severe and intractable muscle and nerve pain.

The majority of TMJ patients experience temporary discomfort and gradually
get better with or without treatment. However, for many others, it can be
the beginning of a nightmare in which lives are destroyed, dreams
shattered, families torn apart and people left bankrupt, desperate and
without hope. If you suffer with TMJD, you may have spent years of your
life and thousands of dollars being referred from one doctor to another
hoping for relief.

As TMJ Diseases/Disorders patients, we can attest to the above nightmares.
However, in spite of our pain, we consider ourselves to be the lucky ones.
Many individuals suffering from TMJ disease/disorders received TMJ
implants. Unfortunately, there has been nearly a 100% failure of the TMJ
implants. The implant materials fragment, causing damage to bones and
tissues surrounding the TM joint, and migrating to other areas of the
body. These patients are slowly dying painful deaths. Removing the
implants is essential. However, even after the implants are removed, the
implant materials continue to cause damage and tremendous pain.
Consequently, these people are disabled, due to the craniofacial and
systemic damage caused by these implants. That's why we are writing this
letter. We are fighting for our friends and co-sufferers.

Implant patients have been failed not only by the implant manufacturers
and surgeons, but also by medical insurers, state governments, and the
federal government, including the FDA and NIH. Inadequate scientific
studies were done before implants were used. Because the FDA approved
these devices, surgeons implanted materials which are destroying the
bodies of implant patients. There has never been a registry of TMJ implant
patients, however it is estimated that approximately 100,000 people have
received these implants. We do know that many of them are dying. We have
been alerted to four deaths since January, 1999 that were a consequence of
secondary problems arising from implants and multiple surgeries.

Many medical insurers do not cover TMJ treatment of people with TMJ
disorders; they are allowed to dismiss it as a dental problem or exclude
TMJ coverage entirely. Without insurance coverage, many of the implant
patients cannot afford to have their implants removed nor the subsequent
medically-necessary treatments. Though the implant is recommended to be
removed, it does not alleviate the pain, dysfunction, or problems that are
a progression of TMJ implant disease.

TMJ/Implant patients are ignored by the medical establishment and by
society itself. TMJ patients lack the political clout of the more
established diseases, and we have no celebrities to arouse national
attention to this serious problem. Because the NIH has ignored directing
funds toward this disease, this disease has not been given proper
scientific attention.

In its absence we are suffering the stigma associated with diseases that
medical and basic research have no answers for. Our government should not
ignore a situation the FDA allowed to occur.

Help is needed to remove the implants, to provide pain treatment, and to
research and treat the damage done by the implants and the materials left
after the implants are removed.

Please give us the name of the person on your staff who will be assigned
to follow up with us on this matter. We hope to hear from you.

Old 09-11-2003, 01:30 PM   #3
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Cymy Sue HB User
Thumbs up


This is a wonderful letter. I hope everyone who has suffered from any type of damage from treatment or surgery for TMJD will participate in both of these projects.

It's also very important for all who are in treatment or seeking treatment to let our government know that we need help.

Cymy Sue

Old 09-11-2003, 04:17 PM   #4
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Cymy Sue HB User

Old 09-12-2003, 12:36 AM   #5
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CherylLynn24 HB UserCherylLynn24 HB UserCherylLynn24 HB User

Cymy Sue,

I do intend on sending the letter that Elaine provided. I also am going to send a letter explaining my son's 'story' pertaining to this mess, as well as the 'new' problems that we're having with the insurance company questioning all of his treatment. What a MESS this all is.

Last edited by CherylLynn24; 11-02-2003 at 10:28 PM.

Old 09-12-2003, 01:42 AM   #6
Join Date: Jul 2003
Location: CA, USA
Posts: 462
mdla HB User

Im going to send this to the major CA gov. nominees too!

Old 09-12-2003, 02:53 AM   #7
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Cymy Sue HB User


I think this is something that maybe could help.
I believe the letters to our Reps. should get some attention if they recieve, hopefully hundreds.

(Thousands of people belong to the TMJ Assoc. or read their material)
We won't be the only people who see this brief.

I hope, if the Show does not choose any TMJ stories this time ( hopefully a few of the TMJ injury stories will make it), if they get enough stories from TMJD "Injured People" (which would be in the thousands if enough people see it), they might consider airing a show to tell the tragedies and problems of the TMJD Epidemic. The Implant atrocities, the Surgically damaged, the people hurt by inappropriate ortho and dental treatment and splints, bad Doctors and Surgeons, Insurance refusing to pay, severe TMJD not being designated as a disability and people just not able to find anyone to help them.

This is not just to get a few of the most badly injured on the show. (I hope they do.) But, if they are flooded with letters and stories, maybe someone will take notice. There is power in numbers and that's all we have. Reportedly, several million people suffer from some degree or stage of TMJ Disorder or Disease in this country. We have very few "Champions" for our cause. We only have ourselves to push for help with this terrible disease.

This could be a beginning to expose what has been going on with TMJD since diagnosis and treatment became widespread. This would be going back about 30-40 years, maybe longer.

When I was diagnosed 26 years ago, very few people had ever heard of it, including me. The majority of the population and Medical Professionals "still" don't know what it is and how it devastates lives.

The majority of those who do treat, are still doing more damage than good.

The NIH began 34 years ago to try to get TMJD designated as a "Real Disease", to set standards of treatment and surgery. To set policies so that Insurance could not deny treatment. To find out the true numbers of people who have this disease. To decide if it should be cause, in many cases, for disablity. So far, they have added a couple of agencies & handed the problem off to them. The last agency is still trying to decide exactly what to do and how to do it.

There has been very little progress made.
We still have no "Specialty" to treat us.
(Harvard has said they are going to look into adding exclusive "TMJD Training" into their Medical Curriculum. This would produce Specialists highly trained in every aspect of the disorder/disease to treat TMJD only. This will take time, but hopefully if Harvard does it, other Medical Schools will follow)

We still can not get most Insurance Providers to pay for the treatments that work.

As far as I know, no one can get disability with just a diagnosis of TMJD, even after damaging surgeries, including those with bad Implants. The ones who have, had other disabling problems or diseases.
(I've never applied, but I know others have and they are turned down.)

From my own personal experience, being involved in almost every aspect of this problem for the last 26 years, very little has changed. I don't believe we can wait a few more decades for help and recognition.

Sorry to get on my "Soap Box", but everyone who sees this brief, regardless of the degree or stage of TMJ problems, needs to be heard.

If we don't do everything we can to help ourselves, I don't believe anyone else is in a hurry to do it for us.

The TMJ "Implant Injured" have been heard in Washington a few times. The TMJ Org's. have been trying for many years to get something done. Maybe the affected "Millions" need to get involved for someone in power to understand the need.

I don't know how much good this will do, hopefully something will come of it. Again, this should be just the beginning. We should continue to seek ways to change the way "things" have been in regard to TMJ, since before most of us were born.

Cymy Sue

Old 09-12-2003, 10:08 AM   #8
Join Date: Nov 2000
Location: Montana
Posts: 407
Elaine HB User

Not all people have problems with the implants so if this doesn't concern you and you feel your implant is improving your quality of life, then there is no need for you to even bother yourself with this thread. There are a few successes, very few...I happen to be one of the "unlucky" ones with no insurance. I am not in any way saying that "all" implants fail, how would I know something like that? Common sense should know that this letter would be for the ones of us who do have TMJD,(with or without implants) no insurance coverage, "failed" implants who can't afford to have them removed.

Old 09-12-2003, 10:12 AM   #9
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DianeTMJ HB User

Hello Cymy Sue-
Thank you so much for this information. I went over to Oprah's site, I sent her my story. Then this morning, there is a request for "want a hook up" on Oprahs site, where they hook people up. Well, I then sent ANOTHER message, requesting a hook up for not just me, but for all that have TMD. SOmeone who would take a grass roots campaign and run with it. To not let this beast go until the NIH/NIDCR/ADA and anyone else sits up and does something for the 34 miillon people in this country alone that have TMD.
I am sure Oprah is going to get sick of hearing from me but dag gone it, this has to come to an end and we all need a fighter, someone who will be in the faces of the politicans, the NIH EVERY DAY until we get help.
Okay, sorry about that, I am just sooooo frustrated for everyone that suffers with this whatever it is, since their is no classification and it is of course ALL IN OUR HEADS! Boy, I guess I am fired up this morning huh? Please forgive my sarcasm, I just think if I read one more post where a dr/dentist has said it is emotional, I will scream!

Please, everyone, send a message to Oprah, it is going to take someone like her to get some fire under the powers at be, not just for ourselves but the countless others that have not found HB or what is wrong with them.
Okay, sorry

Old 09-12-2003, 12:00 PM   #10
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Location: Alabama
Posts: 1,021
Cymy Sue HB User

Elaine & Diane,

As you know, we have several members who are implant victims and not able to post any longer, due to the damage that has been done and the illnesses they suffer. I feel that anyone who would want to send a copy of your letter would be "filling in" for them. If there are several on our board who are so badly disabled, I feel sure there are many others "Out There" who are not able to participate in a forum such as HB nor this request. I think some of us could "fill in" for them, too.

Your letter is well worded, easy to understand and it's intent is very clear.

Everyone is free to send letters regarding their own condition and problems with treatment or general information regarding problems we all face.

We all need to be involved in some capacity.
We are all here because of the pain we suffer and the problems we have finding adequate and appropriate treatment. Also, to not be injured by those we go to for help.

Diane, Please stay "FIRED-UP". Maybe it will be contagious.

Thank you both and all who have joined in this "Step" to help ourselves and all who suffer with TMJD.

Cymy Sue

[This message has been edited by Cymy Sue (edited 09-12-2003).]

Old 09-12-2003, 06:24 PM   #11
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TiffanyAnn HB User

Cymy Sue, Elaine, Diane:
This is great. I have went to site and I have made a copy of your letter Elaine. This is wonderful. I will be sending my letter this weekend and I will go check out Oprah's site as well. I have not had surgery but I have suffered greatly and my life has been greatly affected TMJ. I want to do ANYTHING I can do to help. Please continue posting anything of this nature. I am willing to speak up and I am willing to write letters to anyone who will listen. It's about time people stopped blowing us off as nutcases. Thank you all so much.

[This message has been edited by TiffanyAnn (edited 09-12-2003).]

Old 09-12-2003, 06:40 PM   #12
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DianeTMJ HB User

Hi Elaine, Tiffany, Cymy Sue!
Yep, I am writing letters, I am mad and there is NO stopping me at this point. Tiffany, Elaine, Cymy Sue, EVERYONE, be sure and also look at Oprahs site for be a guest, then look for the I want a Harpo Hookup, to pull a few strings. I also sent a message about wanting her to hook all of us TMD patients with a real go getter, that will be our voice and get the grass roots campagin started.
I am mad, I do not want anyone to ever, ever, ever suffer the way I did. I do not even blame the 13 dentists anymore, I put the full blame on the NIH, NIDCR and ADA. Arrrggghhhhh.
I promise, I will not forget about this one until it is put to rest.
This is great, this is what we need, all I have to say is watch out NIH, there are now a bunch of really, really frustrated and mad TMD patients out there and we are not going to take it lying down anymore. GIVE US SOME HELP!
Oh, that feels so good!
Perhaps if Oprah gets enough requests from TMD people she will somehow someway help us. We need help!
Hugs everyone

[This message has been edited by DianeTMJ (edited 09-12-2003).]

Old 09-12-2003, 06:44 PM   #13
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CherylLynn24 HB UserCherylLynn24 HB UserCherylLynn24 HB User

It's SO nice to see everyone here so 'fired up'!! We all CAN make a difference. You Go Girls!!

Old 09-14-2003, 05:34 AM   #14
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Cymy Sue HB User

I just want to make sure everyone who might be interested has a chance to see this. I won't bump again.


Old 09-14-2003, 11:56 PM   #15
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CherylLynn24 HB UserCherylLynn24 HB UserCherylLynn24 HB User

Oh Cymy Sue,

We'll take turns bumping this one up! This is something valuable that can help all of us (including our children, grandchildren, etc.) in the future. This is something that everyone needs to see and participate in.

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