Jaw Tightness Issues - our story.
By Tracie Donati.
My daughter Taylor Winchell is 13 years old with SMA Type II. We are blessed that she is in very good health most of the time, aside from muscle contractures that are increasing over time.
In the last two years, we began to notice the range of motion in her mouth was getting worse. It was becoming more and more difficult to perform simple and necessary daily functions like brushing her teeth and eating. Her jaw was literally closing little by little. To complicate matters, she had severe overcrowding of her teeth and was in desperate need of braces. The dentist had a difficult time during a regular cleaning and suggested waiting to refer her to the orthodontist until her mouth was able to open up enough to place the brackets.
We are fortunate enough to be located 20 miles from one of the most renowned children’s hospitals in the world. We received a referral to their Craniofacial Clinic where Taylor was scheduled for an "all day" appointment. There, the best in their fields collaborate to find a diagnosis and propose a treatment plan to correct much more severe problems than we were experiencing. Taylor saw an Orthodontist, Pedodontist, Oral Surgeon, Plastic Surgeon and several interns that day. They scheduled an appointment for her to receive a CAT scan and a Panorex x-ray to aid in their diagnosis.
After a few weeks, we received a letter in the mail with no clear diagnosis, and a very vague treatment plan. The Plastic Surgeon took the lead on the case and suggested a "jaw jack" for her to use several times per day over a six month period to determine if this "non-invasive" procedure would work. Jaw jacks are as archaic as they sound, and definitely not something I was ready to put my daughter through without more research. The very technical report told us that the results of the tests couldn’t make any determinations but seemed to keep mentioning TMJ (Temporal Mandibular Syndrome) throughout it.
As I arranged to take Taylor to a TMJ specialist for another opinion, I consulted with our chiropractor, Dr. Greg Toumayan, who sees Taylor about every 5 weeks to manage the pain that her displaced hips cause her. He checked her jaw for signs of TMJ and concluded that although it may exist slightly, it certainly wasn’t severe and he didn’t feel that was the problem. As we were discussing the problem, we were looking through one of his textbooks on the muscles in the face. After much discussion, he suggested putting that area of her jaw on a Tens Unit Muscle Stimulator.
I’ll never forget that day, because rarely do results occur immediately and after 10 minutes on the machine, it not only looked as if she could open her mouth more, but she felt as if she could open her mouth more. We were so amazed and the doctor was so pleased he gave us a unit to take home with us to use 2-3 times per day for 10 minutes each.
Several months later, Taylor now has her braces. She certainly doesn’t have full range of motion, but the difference this has made in her life is dramatic. We can get a Sonicare electric toothbrush over all surfaces in her mouth easily, and those are rather big units. We still have to "squish down" the hamburgers, but we don’t have to put them in tiny bite size pieces anymore.
I talked to Audrey during the conference because we had spoken of this problem over the phone before. She asked me to share this information in the newsletter. I’d like to take this opportunity to thank her and all of the remarkable people who arranged such a successful informative conference and make such a difference in the lives of families with SMA.