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And the Committee heard from the American Association of Oral and Maxillofacial Surgeons

At the end of the NAM meeting, Dr. Gregory Ness, representing the American Association of Oral and Maxillofacial Surgeons (AAMOS) gave the following comments: “AAMOS welcomes the interest and support of the Academies, the NIH, NIDCR, FDA and The

What Allen Told the Committee

Allen Cowley addressed the second open-to-the-public meeting of the National Institute of Medicine's (NAM) Committee on Temporomandibular Disorders (TMD) held on March 28, 2019 in Washington, DC. No stranger to the world of TMD, Dr. Cowley is the hus

Some Thoughts on Depression

It is hardly surprising that the chronic pain and limitations in function that many long-time TMJ patients experience can be accompanied by a state of depression, a sense of exhaustion and hopelessness.

Upcoming NAM Public Webinars on TMD

The National Academy of Medicine's (NAM) Committee on Temporomandibular Disorders (TMD): From Research Discoveries to Clinical Treatment is hosting two public web conferences on Wednesday, June 19 and Wednesday, July 31.   Webinar 1: Pati

The NAM Committee Heard from Patients, Too

At the March 28, 2019 public meeting NAM committee members had a chance to hear from TMD patients who had submitted testimony for the record.

The NAM Committee Heard from Patients, Too

  • Jun 14, 2019

At the March 28, 2019 public meeting NAM committee members had a chance to hear from TMD patients who had submitted testimony for the record. We’ve included a couple of examples (with links to more). Adriana addresses the issue of TMD not having a home in any health specialty while Lutricia’s recounts the brutal history of her treatments and the consequences of a failed implant.

What Adriana said...

I'll get right to the point: we're here because our current "system" (for lack of a better word) for treating TMD is not only broken but it's fragmented, and patients are falling through the cracks and left feeling abandoned and alone. These cracks are actually more like one huge gap or a divide between the fields of dentistry and medicine, and it is in this no man's land that TMD patients find themselves. Hip and knee joints belong to medicine, where there are well-established protocols in place, but the TM joint falls under dentistry. This causes all sorts of issues for us in terms of treatment, pain management and insurance.
 
It's our dentist that refers us to an oral surgeon, so our family doctor is out of the loop from the get-go; meanwhile, they are the ones that are actually treating our symptoms YET medical doctors have no knowledge of TMD, and round and round we go!
 
After my right TM joint was replaced.....

And I'd like to add here that it was replaced because I was told the joint had fused. I don't recall any alternative options given to me. I was simply told that the joint needed to be replaced and what it needed to be replaced with. He was the surgeon. Who was I to question his diagnosis or treatment plan. I had no reason not to trust him.
 
After it was replaced, my surgeon deemed the surgery a success because the joint was functioning and my opening was acceptable. I was to come back in a year. When, in tears, I began to list my new, more intense symptoms and the fact that the painkillers I was taking barely touched the pain, he stopped me mid-sentence and said, "you need to deal with those issues with your family doctor." In that moment I felt dismissed, ignored and devastated.
 
Go to my family doctor? What does she know about any of this? So, according to the surgeon the surgery was a success, but somehow I had to convince my family doctor and the insurance company that I was in MORE pain, and ultimately unable to return to work. But worse than that, was that the one man/doctor "qualified" to acknowledge my pain, to possibly "treat" my pain, had dismissed me and didn't want to hear what I was experiencing!
 
What do I do now? To whom can I turn? Who will believe me? There was no one else to turn to in dentistry. Oral surgery is the last stop.
 
So, the patient is left to do the research. They have to fight for and dictate their own treatment. They have to find a way to manage their pain. They have to deal with the fact that every aspect of their life has been affected by "this." And what is it really that we are dealing with? Muscle spasms, nerve pain, headaches, migraines, neck pain, biofilm, sleep apnea, poor diet, depression, job loss, quality of life issues, etc., etc. What what fields do those issues belong to? The pain clinic? Psychiatry? Infectious disease? Sleep disorder clinic?.... And again, what do they know about TMD?
 
To Whom Do We Turn?
 
We need a comprehensive approach, a combined effort, a coming together or meeting of the minds to address all aspects of this disorder. The medical and dental communities need to come together on this because TMD is obviously BOTH a dental AND a medical problem!
 
We have learned, through the collective suffering of TMJ patients, that surgery should be a last resort, and that we should not count on it to help reduce our pain level, BUT when we are in unbearable pain, day after day, and another surgery gives us even a "glimmer" of hope for some relief, we will take it! We will take it if we are facing this alone, if we are facing it without the facts, if we are facing it without an alternative approach, if we have no other supports in place, we will take the risk. This is how desperate we are because our pain is rarely managed well.
 
At one point I found myself envying cancer patients. That feels even shameful to admit especially since I watched my sister battle cancer for two years. She's okay now. What is really the point is with cancer, one way or another, the suffering ends. But also with cancer, the world stops for you. Meals are made for you, compassion and support come flooding in. Ribbons and marathons and foundations are everywhere. No one would dare question a cancer patient's symptoms or pain.
 
Our experience is vastly different. Ours is one of isolation, loneliness, little compassion, and little awareness.
 
TMD has affected every aspect of my life: physically, emotionally, financially, psychologically, professionally, and it has affected my relationships, my passions, my independence, and at times my dignity. It cut me off at the knees and changed the landscape of my life, and what I imagined my life would be.
 
I have had to accept that, we've all have no choice but to accept that. It would just be a whole lot easier to do that if what we are experiencing would be taken seriously. If we would stop being dismissed and abandoned.


I have a dear friend who has endured 18 TMJD surgeries. Her "glimmer" of hope came in the form of bilateral rib grafts by a surgeon she trusted who was trying to develop a protocol around rib grafts. She had already endured 15 surgeries by then; every treatment, every device on the market, experienced every kind of averse side effect, and figured that if she rid her body of these foreign devices that perhaps her body could heal and the pain would subside. It seemed kind of logical....remove the problem.

Well, you guessed it, she is worse off than ever. She has been on intravenous antibiotics for months now, with no end in sight. Her pain is unbearable and she would like nothing more than to never wake up. They may have removed the devices but the biofilm left in her system, along with yet more muscle and nerve damage, has meant that her condition continues to deteriorate.

I tried to find her a physiotherapist when she first got back from having the surgeries done here in the states. There was no physiotherapist qualified to treat TMJ that would take her on after hearing her history. I also tried to find her a pain specialist. I contacted the Toronto Headache and Pain Clinic. They don't take patients that are on any kind of narcotic.?? She needs a new family doc but is terrified to do so, afraid that a new doctor may not understand the complexities of her condition and take her pain meds away. Infectious disease tells her to go see an oral surgeon. The only oral surgeon left in Canada that's qualified to see her, given her history, is the same surgeon that implanted some of the devices that devastated her life to begin with.

Did I mention how dark it is in this "no man's land" that we're in ?

In my own journey, I felt I could leave no stone unturned. At one point I decided to contact the company that manufactures the device that I currently have. I had to know what they would say. I was directed to call the woman who is in charge of "global complaints".

I explained that, given my pain pattern, my physiotherapist feels the stock device is too big for my joint space. Imaging has established that one of the screws is too long and has gone through my zygomatic arch and into my temporal muscle. She said that she had received more complaints about the size of the device. She said this would all need to be verified by the surgeon that put in the device. I explained that he was deceased, so she said she would try to expedite an appointment with another surgeon.

Too make a long story short, she never followed through, and when I called her on it she said :"I said I would "try". When I asked her about the screw, she started to get irritated and simply said: "We just make the device, we're not responsible for how they are put in". She suggested I contact the company rep for the surgeon that operated on me, so I did. He flat out denied having knowledge of ANY complaints about the device whatsoever and suggested I see the same surgeon the Global Complaints rep suggested. The problem is that that surgeon is one of the surgeons that the company uses to train other surgeons, and uses as a guest speaker. I decided to save my money.

The last stone I turned over was to go directly to the surgeon who designed the device. He was surprisingly forthcoming about my issues. He admitted that biofilm is an issue, that yes, a screw appeared to be too long, the fossa seems to be pushing into my ear, and the device may or may not be too big (he didn't really know anything about that).

His conclusion was that even IF the device is too big, and the screw is too long and the fossa is pushing into my ear, and biofilm is an issue, what are my choices?? He said that surgery for me just wasn't an option; I would ultimately be worse off. He suggested I take antibiotics when the biofilm flares up and sent me on my way.

Don't get me wrong, he's right about surgery not being an option, and I'm glad he didn't suggest it, but again.......now what?? I have to now somehow educate my family doctor on biofilm? I have to explain to my doctor about the fossa and the screw in the hope that I get adequate pain management?? He really has to just take my word for it. I happen to have a wonderful family doctor, but I too fear a day when I may have to get a new one. I just can't imagine breaking in a new one....re-educating them on TMJD and the side effects of my device. What if they're less empathetic, less "open" or willing to take my concerns seriously, or my pain seriously.

What is happening in Toronto is happening throughout the world. The confusion, frustration, isolation, lack of understanding - everything I described. It is clear to us, the patients, that the field of TMJ needs drastic changes, among which are increased research, education, awareness, but more importantly the entire health care community needs to be educated about the complexities of this condition. The silos between dentistry and medicine need to be shattered. We can no longer be isolated from one specialty and another. This is devastating and dangerous for the patients!

And Here's Lutricia's Story

My name is Lutricia. I never had TMJ pain but I did have an overbite which a surgeon attempted to fix with braces and an orthognathic procedure. My teeth were ground down. My right joint became displaced and perforated and the surgeon decided on another procedure and implant.

I am a Vitek Proplast Teflon survivor/victim. It is important for everyone here to know that this implant was put into TMJ patients in the 1980s without evidence of bioengineering, biocompatibility, animal or clinical data - no evidence of safety or efficacy. This implant was sold to patients as a miracle implant. It had a 100% failure rate and in 1991 the FDA issued a class one recall because this created what they called "open communication to the brain." What this means is the implant worked its way through the skull into the brain. The manufacturer shifted his patents off shore, declared bankruptcy and fled the country to Switzerland. The FDA was then put in the position for the first time to handle the recall.

During a Congressional hearing, triggered by The TMJ Association in 1992, we were told things would change and believed a catastrophe like this would never happen again. In 2006, a Government Accountability Office (GAO) report, again requested by The TMJ Association, revealed that TMJ devices currently on the market were approved with minimal to no bioengineering or clinical data. All the studies supporting the PMA applications had many issues including deficient patient follow-up, which made it difficult to determine outcomes over time. The GAO report commented on one device that, "either good engineering data or good clinical data was acceptable to approve a device - not necessarily both" since clinical data was largely missing, bioengineering data was accepted but later admitted to be inadequate. FDA management acknowledged that need for devices outweighed concerns. Another revelation in the GAO report was that FDA management indicated that the clinical data for a device was not expected to be of high quality "because the sponsor was a small manufacturer." In the end these devices were approved because "the patients need something." 

Back to myself, the Vitek implant was removed, a total joint prosthesis had to be implanted requiring part of the jaw bone to be removed. Then I had another total joint. Some of the issues I've had following the surgeries/implants until now are constant pain, surgery to tighten loose screws, surgery to remove heterotopic bone and foreign body giant cell reaction - possibly working through the skull to the brain, a compromised immune system, allergies and itchiness all over my body which appears to be like eczema, trigeminal neuralgia, a white mass on my brain, ulcerated esophagus, and facial paralysis.

There has been a-disconnect between patients and everybody else. There are few or no answers for patients like me. Patients are left on their own to try and find someone who may listen to them and who may understand something about this TMJ problem. Patients end up being referred from one dental/medical person to another and in the end, little is resolved and some of us keep getting worse. It is common that patients are simply abandoned or their disorder and pain is denied as being real. I for one can no longer trust anybody.

My husband has stood by me all these years, constantly frustrated by this TMJ system. I'm lucky; many patients' marriages have ended up in divorce. Families have disowned patients; friends distanced themselves because they do not understand. Professionals advertise our disorder as a click and a pop easily fixed but do not show the true problems to the public. Homes have been mortgaged and savings exhausted because now, insurance companies will not cover anything relative to TMJ. Patients are forced to give up their jobs and promising careers because of the many medical procedures, pain, disability, expenses and medications they must take just to get through the day. 

What I want to see going forward is research on just what Temporomandibular Disorders are − research that validates the safety and effectiveness of every treatment for TMD. I want research on every aspect of a TMJ device and related patient care. I want better practices and protocols for all stages of TMJ surgical procedures and a formal collaboration with the musculoskeletal branches in medicine. There is no reason we should not have the research on the TM joint that exists on every other joint in the body.

Every surgeon who implants a TMJ device must have extensive training. Every device should have a unique identifier so it can be tracked. Manufacturers should come to FDA with all clinical, bioengineering, biocompatibility, animal and clinical data to prove safety and efficacy of their product. We need an independent entity to which all explanted devices can be sent for analysis in which all data submitted, including by patients, can be analyzed and the resulting information credible.

Today I've shared with you an historical perspective of TMJ implants along with my personal experiences in order to show how the lack of science on this condition and the treatments can inform us how to direct future research to ensure a safer scientific evidence based future for TMJ patients. I thank everybody for this extraordinary opportunity for our voices to be heard.  

View additional NAM patient presentations:

TMJ Disorders

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