Who is TMJ Hope?

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.

That surgery unfortunately didn’t help. We were discovering that my case was totally out of the ordinary. What followed were six more surgeries, and each time my surgeon went in my joint it was fused together (bilateral TMJ ankylosis). My opening at its smallest was less than 5 mm. I knew I should not continue having surgeries, however my options were extremely limited — I couldn’t open my mouth, I couldn’t eat, and I couldn’t brush my teeth properly… Not because of pain, though it was excruciating, but because my jaw joints had literally fused into one piece. I was stuck between the proverbial rock and a hard place…. do I continue having surgeries that only help temporarily or…?

I remember the exact time and the view from the doctor’s exam chair when my surgeon said he could not help me anymore. He said he was truly sorry, and I could see in his eyes that this was the absolute last thing he wanted to tell me. He felt that the only option left was referral to a different surgeon……. for bilateral TMJ total joint replacement. I guess I must have tuned him out because I went home, packed my bags, and moved to Austin, Texas. You know — new venue — new life….Leave the excess baggage and jaw problems behind, right? I woke up one morning several months later with my jaw swollen and almost no opening. The pain was over the top yet again… So —

I packed my bags and moved back home to begin the process of finding not just any surgeon, but the best surgeon. I told myself that this surgeon was not doing my total joint replacements, but I Custom TMJ Total Joint Replacementswould just check out my options. After interviewing several surgeons, I found “the one.” He just happened to be 2000 miles away. So, yet again…I packed my bags (and my mom’s bags), and we were off to Chicago. My fused joints were removed, and my jaw was wired shut. Then the wait began, and 10 weeks later… We packed our bags and returned to Chicago again.

The wires were finally removed and I got my new custom titanium jaw joints. The next morning my mom brought me the best grilled cheese I’ve ever eaten (I can literally see it in my head right now in all its greasy glory)! After being wired shut for so long, I must say that it made my tongue very happy! Then, I got up, got dressed, and walked out of the ICU for the second time in 3 months.

I wish I could say that I lived happily ever after, but that is not the case. There were a couple things that I didn’t really think about much prior to the joint replacement, even though I felt that my expectations going into it were very realistic. Now that I don’t have natural joints, no matter what happens, I can never get them back. I will forever be reliant on medical science. To think that this all started when a neighbor’s dog attacked me and threw my face back and forth in his mouth….. wow.

What I have come to realize is that maybe there are other plans for me. I no longer spend a lot of time being concerned about things I can’t change. I don’t wait for the other shoe to drop. I’m not good at proper nutrition… I don’t sleep when I should…. I drink too much coffee, and have problems with schedules. But… this is my life and for the first time in years, I am actually living it! The times I feel the best are when I spend my energy helping others. I remember how I felt when I couldn’t find the information and support I needed years ago…
And that, my friends, is why we are here today…
. Welcome to TMJ Hope!


TMJ Hope has been created for you. A place to learn, to share, and to meet others who truly understand what you are going through. As long as we are in this together, there will be hope.

About The Author

Stacy

Stacy is the Founder & Executive Director of TMJ Hope. After being mauled by a dog, she experienced severe jaw pain that was not relieved by conservative treatments. After several surgeries, she had TMJ total joint replacements in 2006.

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