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TMJ Patient RoundTable Project: Status Update

The TMJ Association is acting as the catalyst to develop the TMJ Patient RoundTable, a broad initiative to advance the interests of patients with temporomandibular disorders (TMD). It encompasses collaborations with all stakeholders and

Educational Brochures on Chronic Overlapping Pain Conditions

This brochure addresses what are Chronic Overlapping Pain Conditions (COPCs), how COPCs are diagnosed, the complexity of the chronic pain experience, and how to work with your health care provider to develop a treatment plan. It is available by postal ma

Study Highlights TMD Evidence and Current Practice Gaps

The TMJ Association has long championed the need for strong evidence-based demonstrations of the safety and efficacy of TMD diagnostics and treatments. Sad to say, as the following journal article indicates, even among a network of research-oriented practices, dental providers are still resorting to such TMD treatments as occlusal adjustments in which teeth are irreversibly moved, ground down, or in other ways altered, a treatment for which there is no scientific evidence of efficacy.

Beware of Ticks and Lyme Disease

We are currently in the peak season for Lyme disease. Each year at this time we highlight this topic because we have heard from a number of patients over the years who were misdiagnosed and underwent unnecessary TMD treatments when they actually had Lyme

#*!"@!**! ... May Help Your Pain... and Improve Strength!

Our headline is adopting the comic strip convention of using symbols to denote swear words because we are intrigued by a report that swearing may have some health benefits.

Tina & Mackenzie's TMJ Journey

  • Jun 15, 2017

My daughter was fairly young when she had braces. It was during this time I found out that she was born without a permanent tooth in the front. This explained why she never fully lost her baby tooth because there wasn’t a tooth coming in to push it out.

Throughout the time my daughter had her braces she complained of headaches and not feeling well. I, like many parents, was under the impression that her teeth were moving and the movement was causing some pain. What I wasn’t aware of were the events that would take place after her teeth were completely moved and her alignment was completely off.

Fast forward to April 17th 2012, my daughter’s 16th birthday. Mackenzie had been complaining of not feeling well and, looking back, I never thought of the braces.

Mackenzie was sitting in class and had a wave of vertigo hit her so intensely that she couldn’t move. With her head, jaw and neck hurting, she sat frozen, not knowing what to do. Her teacher noticed immediately. She was sent to the nurse’s office and they called and asked me to pick her up. I was about an hour away, so I called my friend who lived 1 block from the school and asked if she could help me. From that day forward we spent much of our time in ERs and at a health clinic trying to figure out the problem.

First, we waited 6-8 weeks to have an MRI of the brain. There was speculation that she could have a brain tumor. I remember waiting for those results on pins and needles and also remembered the relief I felt when the MRI showed that there were no tumors. However, my daughter’s condition continued throughout the summer, and we still did not know what the problem could be.

By August, school resumed and she was driving herself to class. One morning, as I dropped off my youngest daughter, I received a phone call from Mackenzie who was crying hysterically. She was pulled off to the side of the road, where she sat with her head spinning, in pain with her ears ringing loudly. She said “Mom, I can’t take this. If I have to live like this the rest of my life, I can’t do it”. My daughter is not a drama queen. She generally has a very calm nature. I knew when I heard those words just how badly she was suffering, and how brave she was trying to be. I called her Dad and drove to her parked car where she sat crying. I remember feeling terrible and helpless, because I didn’t know what to do. That day, like so many days, I felt confused.

As she went to many appointments, with still no explanation for her pain, it was finally suggested that her problem may be psychological, and she should see a therapist. Not knowing what else to do, I agreed. I will never forget what she said when she came out of that meeting. She said “Mom, I DO NOT have any mental issues. There is something NOT RIGHT! Why doesn’t someone believe me!” I took one look at her and told myself we would NEVER go back to another therapist appointment again until we found out what was wrong.

By October I had to leave work constantly to pick my daughter up from school, because she was so sick from the constant spinning in her head, pain and the ringing in her ears. I mean honestly! Think about it! If you had constant dizziness, headaches, jaw pain and ringing in your ears, how would you deal with it? You have your head over a toilet throwing up, crying. Get the picture? I even wrote the school because there was some construction work going on nearby that could be causing excessive noise, and I also wondered if they had checked to see if there were any signs of black mold in the building. When I look back, I think I must have looked like a lunatic, but I didn’t know where to turn.

Sometime in October I decided to write on my Facebook wall to see if anyone had heard of a similar condition. I basically put my story out there for some kind of help, reassurance and/or support. Within a couple of hours of my post, a facebook friend by the name of Jonny wrote his story about TMJ and the exact similarities he shared with my daughter. I sat there amazed, as I read about his description of vertigo, ringing in the ears, jaw pain, headaches etc. I now had something to go by and my mission became even stronger.

Another problem in seeking any treatment that could help is that you end up going outside any insurance you have and trying to negotiate payments of some sort. Some days you just think "How can I afford all this?".

By November Mackenzie was so bad that her doctor had already written her an excuse to be out of school. She could not function longer than a few hours without having to lie down. I was fortunate, because my boss and co-workers understood. I don’t know how they even dealt with how much time I had to be away from the office for appointments and taking care of my daughter. Not to mention that I also have a younger daughter, who has to be at school on time, has homework, projects and all the commitments of a good student. She was deserving of my time, too... As a parent you start questioning everything. There were days I would look into the mirror and think “Who are you and where did your humor go?” Nonetheless, we had no choice but to go with our journey.

There are so many things that happened in between the beginning of this journey up until now that it would take a book to cover it all. At this time, I will finish with the following:

My daughter had to quit a job she enjoyed and was unable to drive long distances. I became a barracuda, relentlessly trying to find out everything I could about TMJ. Before starting to inform myself, I thought TMJ was a clicking of the jaw. BOY WAS I WRONG! I contacted TMJ.org to continue to research what is known about this disease-this horrible, HORRIBLE condition that has destroyed lives! The public, as well as health-care professionals, needs to be educated about the non-intrusive treatments that are available, before decisions are made that can make the condition worse and cost thousands of dollars. If I am one of the ones to do this, then so be it. I am ready for the challenge!

Tina - TMJ Parent

Mackenzie – TMJ Patient

http://www.tmjparent.com/

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