In Her Own Words: Living With Temporomandibular Joint Disorder

Sharri is a 30-year-old single woman living in Southern California. She works as a teacher for Head Start—a federally funded child development program. She has been battling temporomandibular joint disorder (TMJ) for the last 13 years. TMJ is a painful condition of the joint that opens and closes the mouth. The disorder may affect the jaw joint or the muscles surrounding it.

What was your first sign that something was wrong? What symptoms did you experience?

I've had TMJ since age 17. Although no one has definitely confirmed this, I believe the TMJ was caused by orthodontic treatment. During the course of orthodontic work for other problems, a split palate device was inserted to widen the roof of my mouth. It was in place for about one year. After the split palate device was inserted, I began to have severe headaches. Then my jaw started to click and pop. Eventually, I started having periods where my jaw would temporarily lock shut for a few hours at a time. I would have to insert liquid medication through a syringe into my mouth, which would loosen the jaw after about two hours. These symptoms continued for two years.

My oral surgeon tried a variety of methods to help improve the TMJ. First, I received three rounds of steroid injections over a few months, but this did nothing. Then, he tried arthroscopic surgery to clean up the scar tissue; unfortunately, this was also unsuccessful. Finally, he inserted bite splints—a common practice used to help prevent the teeth from touching. This not only did not help, it caused further damage.

In 1990, my meniscus (a small piece of fibrous connective tissue in the jaw) was removed, and I received silastic sheeting to replace it. This did help reduce the frequency of the symptoms, but it did not work entirely.

Eventually, the silastic sheeting broke, and became embedded into the base of my skull. I switched to another oral surgeon, who had to do major surgery to correct the problems caused by the broken implants. This surgery has made a marked improvement in my symptoms, and I am much better now than I was a few years ago.

What was the diagnosis experience like?

Initially, I went to my primary care doctor. She referred me to a local school of dentistry. However, they felt that my situation was too complex for them to handle, so they referred me to an oral surgeon. I stayed with this oral surgeon for nine years, and he performed several procedures and surgeries—not all of which were helpful or necessary.

What was your initial and then longer-term reaction to the diagnosis?

Well, I was only 17 years old when I was first diagnosed—just a junior in high school. As you can imagine, I was pretty shocked, and didn't really understand why this had happened. It was hard to deal with the constant pain, and it had a big impact on my last two years in high school. Prior to the diagnosis, I had been outgoing, had lots of friends, a straight-A student; much of that changed as I underwent many surgeries and procedures during the next few years.

I have been through a lot with TMJ, at times it has been very difficult. My reaction now is that I am more comfortable, and have become more accustomed to dealing with the problems of TMJ. I also recently had a surgery that finally seems to have helped a lot, so I am coping pretty well.

How do you manage TMJ?

Over the years, I have tried various methods to lessen the pain, and deal with the problems. For pain, I've found that applying moist heat with a washcloth or moist heating pads seems to help. I also take muscle relaxants for pain when necessary. I have also heard from other TMJ patients that certain types of physical therapy and jaw exercise may help.

Today, I use a therabite machine—a jaw exerciser—three times daily to help strengthen the jaw, and open my mouth wider. I also see my oral surgeon every week.

Did you have to make any lifestyle or dietary changes in response to TMJ?

Well, I can't eat anything chewy or crunchy—no steaks, gum, etc. Otherwise, I have not made any changes.

Did you seek any type of emotional support?

I haven't sought any kind of professional therapy. However, I've joined two online support groups, and I've found these to be extremely helpful. People with TMJ are really the only ones who can truly understand what you're going through.

Does TMJ have any impact on your family?

I live by myself, so my family isn't directly affected. When I was younger, I don't think my brothers really understood why I stayed at home so much. However, as they got older, and spoke with my doctors, they understood much more. They are quite supportive now.

I find that coworkers and friends are sometimes a bit puzzled by this condition, and probably suspect that I am overreacting. Some people have had a mild form of it, and they can't understand why I might need surgeries that require CT scans, and why my headaches are nothing like their headaches.

What advice would you give to anyone living with TMJ?

My main advice would be to seek help from people who have had TMJ, and have been through some of the treatments. Also, I would advise everyone to always get a second opinion, even if you think your own doctor is competent. Many of my own problems and subsequent surgeries could have been avoided if I had gone for a second opinion.