I thought it was time that I formally introduce myself. I’m sure that you’ve all wondered… who is TMJ Hope? What follows is part of the story of how TMJ Hope came into existence. I hope over the next few months, together we can turn TMJ Hope into what so many of us have always dreamed of, looked for, and been unable to find…a place you can count on for support, information, and understanding. While there may not be concrete answers and treatments for TMJ disorder yet, there is always hope.
My experience with TMJ disorder began years ago at the age of 12, when I was attacked by a neighbors dog. This resulted in hundreds of stitches in my face and neck. At the time, the damage to my jaw was not apparent and certainly not investigated. The only symptom I had were drop to the ground headaches. The doctors believed they were caused by PTSD (which certainly would have been understandable, but we felt they were from something different). Five years later, the symptoms started to change into more migraine type headaches and jaw pain.
I did rounds with my primary care physician, neurologists, orthodontists, oral surgeons, “facial pain specialists”, physical therapists — you get the picture. Next up was splint therapy — I had an anterior repositioning splint, NTI, soft splint, hard, bottom, top, Mora, Gelb, etc, etc. Other treatments I tried included physical therapy, trigger point injections in the face and mouth, prolotherapy, occlusal adjustment, massage, medications, TENS units, and more splints. New doctor meant a new splint. Any relief of symptoms was unfortunately, temporary.
During all this my symptoms not only escalated, but they changed. I was now having daily migraines, and on a no chew diet. The pain severely impacted my day-to-day life.
An MRI showed interior disc displacement on the left side. The doctor agreed that left TMJ arthrocentesis was necessary. Afterwards, I felt worse and my jaw locked again. I was then fired as a patient because as an oral surgeon he “did not treat pain.”
My next surgeon reread the MRI and found that I actually had bilateral disc displacement without reduction on both sides. The next surgery was a bilateral disc suturing (an open joint arthroplasty). I had a great surgeon and fantastic support from my family, but I had no idea what I was in for. As a computer geek I did my best to research what was out there, but I wasn’t happy with what I could find. Where was the support? I wanted someone to talk to before & throughout the surgery, but it just wasn’t out there. I heard from many other patients, who were looking for the same. They urged me to create something.
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