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Consider Including the TMJA in Your Financial Planning

We were recently contacted by Tom P. who informed us that he was including The TMJ Association (TMJA), in his financial planning. Tom wrote the following for us to share with our readers:

The Scoop on TMD Pharmaceuticals

Let's say the National Institutes of Health just handed us a multi-million dollar grant to get to the bottom of TMD and find a cure once and for all. I mean, we could start handing out heating pads left and right, but that kind of relief can only get us so far. Whenever I try a different form of therapy or medication, I like to think about the biology, right down to the cellular and molecular level. Why are the cells that make up my jaw region being such jerks?

Join Us AT TMJ Cafe

The TMJ Association is pleased to partner with Inspire to bring you the TMJ Cafe, a free online support network and discussion community for those with Temporomandibular Disorders (TMD). We invite you to meet others like you, share experiences and tips for getting through the day, and give and receive support.

Sustained and Repeated Mouth Opening Leads to Development of Painful Temporomandibular Disorders Involving Macrophage/Microglia Activation in Mice

Temporomandibular disorder (TMD) is a set of heterogeneous musculoskeletal conditions involving the temporomandibular joint (TMJ) and/or the masticatory muscles. Up to 33% of the population has had at least one symptom of TMD with 5-10% of them requiring treatment. Common symptoms include limited jaw movement, joint sound, and pain in the orofacial area. Once TMD becomes chronic, it can be debilitating with comorbidities that greatly reduce one's overall quality of life. However, the underlying mechanism of TMD is unclear due to the multicausative nature of the disease.

Prevalence of TMD in Sjӧgren Syndrome Patients

Sjӧgren's Syndrome seems to play a role in temporomandibular joint disorders.

Kahla's Story

  • May 13, 2015

As many of you know, it’s hard enough to deal with the symptoms of TMD, let alone the complications of failed surgery or faulty implants. Like so many Vitek implant patients, I’m a veteran of survival. Here’s a brief rundown on my story.

Family violence and a shattered jaw in early childhood changed the course of my life. In my late teens, unwilling to accept the medical advice that I should “just learn to live with the pain,” I explored a range of treatments offered in traditional western, eastern and alternative medicine.

As a 23-year-old in 1982, I left Australia for North America where practitioners were known to be at the forefront of the treatment for jaw disorders. In Portland, Maine, a well-respected surgeon offered me a solution with a promise: “There’s a new jaw disc implant which is state of the art. It will take away your pain, and it never needs replacing.” Wanting to believe in the promise of a pain-free existence, I placed my trust in his hands.

A few years later, back in Australia, I experienced relentless pain that felt like acid boiling under my skin.  It was full body pain, not isolated in the jaw, so I didn’t relate it to the implant, instead I was bounced from doctor to doctor and regularly labelled a hypochondriac. One day in 1993, a doctor I’d seen some months earlier sent me a fax from a U.S. conference that he was attending. The fax read: “The FDA has recalled a jaw disc implant manufactured by Vitek. Was that the implant you received?”

I’d never even heard of Vitek; so, I called my surgeon to find out more information but he was always unavailable. Months of unanswered phone messages, letters and faxes passed until I finally received a letter confirming that he’d inserted a Vitek disc implant though he assured me it was “still the state of the art” with “no real side effects.” He encouraged me to sign the enclosed disclaimer with the promise of sending me $1,000 USD!  I didn’t sign.

An Australian surgeon described the process of removing the Vitek implant and surrounding area as being similar to “scooping out cream cheese.” The implant had dissolved into my blood system and was destroying tissue, particularly around the site. Not only had a large portion of my jaw bone and cheekbone dissolved, the glenoid fossa (the bone protecting the brain from the jaw) had been perforated, which meant that the giant cell reaction (auto-immune response) was now in my brain cavity.

Documentation shows that problems with Teflon-coated implants were reported as far back as 1963. When Vitek launched the device in 1983, 100 percent failure rate was expected.

Because I live in Australia, the only time I’ve ever met other Vitek patients was at the National Institutes of Health Technology Assessment Conference, Management of Temporomandibular Disorder, in 1996. Frankly I’m still processing that conference, but what impacted me most were the patients that I met. We were easy to spot─no words required─just instant recognition as we read the stories etched on each other’s faces. Untrained eyes failed to see our pain; they simply saw disfigurement.

In 1991 the FDA finally recalled the product. Vitek, Inc., was hit with an avalanche of legal claims and the company declared bankruptcy. I had been a plaintiff in medical litigation cases for over thirteen years in Australia and the U.S.A. The first was a class action in Houston, Texas. This was “successful” and funds were procured from Vitek’s bank account in Brazil. Patients were awarded funds based on a point system; I believe I was one of the patients receiving the highest allocation, which amounted to $12,000 USD after costs. A second-class action was entered into when my lawyers found out that my surgeon had been hired by Vitek to train other surgeons on the virtues of Vitek implants. My case stood strongly within the medical fraudulence and negligence laws (particularly with my letter as proof) surviving years of trials and retrials. Then suddenly I heard nothing─just delays and excuses on inquiry. Finally, my U.S. defense lawyers informed me that my case had been lost because it had fallen outside the statute of limitations. Further investigation on my part revealed that my lawyers had made submissions on my behalf 48 hours after the statute of limitations had expired. I had no legal claim against my lawyers because they informed me more than three years after the fact (which protected them from being sued for legal negligence).

A third trial was entered into when my Australian lawyers brought this matter to the Australian court. My case was set to run for a week starting on a Monday morning.  On the Friday before my trial, the Australian Federal Government rushed a new legislation through that honored the statute of limitations in other countries. My case was lost before it had even had a chance to be heard. Still we had to run the case for a day because everyone had been booked. They call this kind of trial “running a dead horse” and that’s exactly what it felt like. I was charged costs, which essentially put me into so much debt, that I entered bankruptcy. 

Until recently, my journey has been silent because my energy was consumed with physical and financial survival. Slowly, I’m learning how to write. Slowly, I’m documenting my research. Slowly, I’ve been dealing with the emotions that bubble to the surface and settle onto pages of my memoir (which I hope will include your stories too). 

It would be a great shame if all the lessons we’ve learned from Vitek were to be buried with us, and I live in hope that the tragedy of Vitek might be transformed into something worthwhile, particularly if we tell our stories.

Our stories empower us to keep going. They might even inspire others who are better trained and have more energy to participate in public dialogues that just might yield different protocols that will protect those who come after us.  Regardless of my view, it is clear there’s an urgent need for an international implant registry to be established, and in this digital age, there is simply no excuse.

We Need Your Help

A short time ago, a highly acclaimed Australian television journalist demonstrated interest in exploring some of the issues I’ve raised in this blog. In order to get the television documentary funded, we need to ascertain the number of Vitek implant patients from Australia. If you’re one of these folks, could you contact The TMJ Association with your details? We’re also looking for people who may be able to speak on camera. On top of all this, it would be wonderful if I could simply chat with you and listen to your story.

My heartfelt, best wishes to you all.

Kahla  

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