This is the story of my horror dealing with TMJ and how it has changed my life. In 1986 I was diagnosed with this disease. At first I didn't know what it was and began to visit doctors. I first went to a number of dentists that weren't sure what it was. Each one had a different opinion and I continued to search.
Other specialists were consulted; Neurologists, Ear, Nose and Throat doctors, Oral Surgeons, Chiropractors and Physical Therapists. So many tests were performed including MRIs, X-Rays, Cat scans, EMG and numerous other tests to determine the cause of my condition and to diagnose it as TMJ.
I finally found Dr. Barry Cooper in Lawrence, NY. He is a TMJ specialist doing research and teaching in New York City hospitals. He performed cranial testing, TENS and Muscle Stimulators, and finally a bite plate.
The bite plate was unsuccessful and made the TMJ worse after an entire year. After seeing another TMJ teaching specialist, I wore braces for about a year with no success in creating a better bite. The only result was perhaps a little better smile, but the TMJ pain progressed in intensity and duration.
Due to the increasing pain, needless to say, I began to undergo the known pain management solutions to combat this. I tried injections, nerve blocks, physical therapy, and pain medications to combat the increasing daily joint and muscular pains in the jaw, neck and head. To this day pain medicines are required just to exist. Of course this saps your strength and makes everyday things, that others perform, into almost impossible tasks.
As the TMJ worsened, I became more desperate in finding a solution. I began a quest to get help with this disability which now it had become. I went searching for an Attorney that might be able to help me to get on disability. I had all the doctor reports available which by this time amounted to tens of thousands of dollars in procedures. Lawyer after lawyer didn't want the case as it was too unknown, hard to diagnose, never been done before and, unlike a physical disability, is not visible to the naked eye. Finally, after many disappointments and perhaps ten or more legal consultations, I found Charles Binder of Binder & Binder. He is a well-known specialist in the area of helping people get on disability. In fact, due to Charles Binder, I was the first person in the USA to obtain disability for TMJ, due to the severity, and set the precedent for others to get help with this condition.
Needless to say, by this time I could no longer work, as it was affecting my life in many ways. Finally, I was referred to Dr. Arthur Elias, Sr. He is an Oral Surgery & Maxillofacial Surgeon teaching and doing research in New York City hospitals with 41 years of experience with TMJ and an expert in his field. More tests were performed and his diagnosis was that the temporal mandibular joint was out of alignment and surgery was perhaps the only avenue. However, he wouldn't operate at the time as the TMJ joint was not showing enough misplacement via numerous MRIs.
Finally after more years of suffering and numerous MRIs the joint was seen to be sufficiently misaligned to warrant the surgery. This surgery unfortunately does not have a high success rate, but had to be done as there was no alternative to getting the joint back in place, other than a full joint replacement. As TMJ has had very little research and funding very few doctors know much about it and the problem is not paid for by medical insurance. The medical companies feel it is a dental problem or a cosmetic issue, and not a neuromuscular condition.
The
operation entails opening the joint and setting it back into the
preferred position. However, it is a risk, as the exact placement cannot
be determined as this joint is far different than other joints in the
body. The surgery was a painful healing process and to this day, six
years later, the surgical location feels far different than the rest of
my head.
After the surgery I was told to fix the bite as I have a cross bite and malocclusion. This requires extensive dental work such as cavities, braces, Invisalign, and even implants to correct this problem and then another TMJ surgery. The cost of these procedures can run $200,000 dollars or more with insurance unavailable. I couldn't afford it and continued to suffer.
TMJ, in itself, is different for each individual as it ranges from mild discomfort, headaches, clicking of the jaw, to severe cases. Severe cases, for example involving shifts of the jaw and teeth, the jaw "locking" up, cranial structure changes, facial disfigurement and subsequent long term effects on even the eye, ear and other muscles associated with the head, neck and shoulders. In fact, the entire body is affected by severe TMJ pain as all the nerves and muscles are interrelated.
I have become debilitated as it has slowly gotten worse. The joint is out of alignment at this time as I face another day in severe pain. The present symptoms make my head feel as if it is in vise making it tighter and tighter. I cannot chew food or open my mouth very well and it is affecting the face, ear, nose and throat. There is no focus and I cannot perform daily tasks any longer as I now am in continual pain with severe muscle spasms from the top of my head down through the trap muscles into my shoulders and upper back. It has changed my facial structure and my entire body. In fact, it has affected the entire musculoskeletal system of my whole body, hence the name TMJD (temporomandibular joint disorder).
I now am bedridden with no life. The pain medications are not effective anymore and I may require stronger meds leading to further complications. I have missed holiday gatherings, a child graduation, and even my Mom's funeral due to this. I require an aide for daily hygiene, but cannot afford it. Insurance will not pay for it and I have tried to get help via the Disability Advocacy program, but due to economic times and restrictions the waiting lists are too long and underfunded.
At this time I feel like I need to be in a nursing home with no hope of recovery to at least have some quality of life. At present I need more TMJ surgery and dental implants to correct the bite. I cannot wear false teeth as this would potentially make the TMJ worse. There is no money for these procedures and I have nowhere to turn to at this time. I can only hope and pray for some relief from the daily horror.
At present, I'm keeping my spirits up. I have always tried to help others in my life, more so even then myself, as a way to survive every day. Thankfully, I was able to open the door for others that have this severe disabling TMJ disease. I prayed to have ten years to raise my children since 1986 and I'm still alive, but have no life anymore.
Please
help me so that I can seek the medical attention I need before it is
too late. The money required to get the necessary procedures done is not
covered by any insurance and is quite a large sum. Any donation would
be appreciated and I pray that you find it in your heart to do so. http://tmjdisabledmystory.com/
Linda C Lynch
So sorry for your pain. Thank you for sharing. If I could I would help, like you I am without insurance with children to feed. Which is why I'm here, doctors are not an option.
I've just been diagnosed with TMJ, and I am glad I was able to read about your experience, as it has helped me prepare for what may come.
Blessings and good health to you.
hello ladies!
- lindaclynch
on Jan. 18, 2012 at 2:21 PM