TMJ Specialist

A couple of weeks ago I was able to get in to see a TMJ (temporomandibular joint) expert who also specializes in EDS. He is only about an hour away from my home and was well worth the trip! It is so nice to see doctors who are not only knowledgeable about their speciality, but also know, work with, and research EDS. EDS causes complications in nearly every part of the body since it is a generalized connective tissue disorder (affects ALL of the connective tissue in my entire body). The issues us EDSers have tend to be unique to us and many doctors have no idea what to do with us. This was not the case with Dr. Mitakides! He says I am a difficult, puzzling case (what's new there!), but thankfully because he is so familiar with EDS it will be no problem for him! In contrast the last "expert" I saw for TMJ had no clue what complications EDS causes and wanted to treat me just as she would any other patient.

At our first appointment with Dr. Mitakides he did a physical examination of my neck, jaw, head, and face to determine what affects my wacky jaw position was having on the other structures of my face, neck, and head. He determined that my jaw is in a much worse position on the left than the right, which we knew because during my last surgery in June of 2014 (can you believe I have gone over 1.5 years without surgery?!?!) my jaw was dislocated. He said this is not an uncommon complication for EDSers, particularly those of us who have neck fusions because they cannot hyperextend our necks so they pry our jaws open too far. The next time I have surgery he recommended to have the anesthesiologist use a pediatric tube for intubation because the chance of jaw dislocation are lower with a smaller tube.

After he did the physical examination I had x-rays taken of my jaw to see what my jaw looked like both open and closed. He expected to see abnormalities on the left, but the x-rays showed that the right side of my jaw did not line up correctly either. Your jaw is supposed to sit on a pad of cartilage when it is closed, but my jaw slides past that pad of cartilage on both sides, so it sits bone on bone. In addition to this, the jaw is supposed to rotate and then when it reaches its full degree of rotation it pivots forward. My jaw rotates normally, but then does not pivot forward the way it is supposed to. Because of this my jaw does not open as far as it should. I should be able to open it wider than most people because of the hyper mobility that EDS causes in all of my joints, but my jaw is on the very low end of "normal" for someone who is not hyper mobile. This is why it is difficult for me to eat an apple whole or open my mouth widely at the dentist.

After discussing it my husband and I decided that we would like to pursue treatment with Dr. Mitakides. The treatment that he uses is a splint that will help reposition the jaw. It is a piece of hard plastic that is molded to my top teeth. I have to wear this splint all of the time, except for when I am eating. This splint helps the jaw to go back into the correct position. I will go back between 3 and 6 times for him to adjust the splint as my jaw keeps shifting so that he can assure that my jaw ends up in the correct position. There is also the possibility that I might need to pursue orthodontics to get my bite aligned, so that my jaw will be able to get to the position we need. We will not know this for several months, however. After he determines that my jaw is in a good place and my symptoms have subsided I will go back to see him about every 6 months to ensure that everything looks good. I will also only have to wear my splint at night once my jaw is where he wants it to be.

The goal for me specifically is to get my jaw to shift to the right because it is deviated to the left and slide forward so that it sits on the pads of cartilage that it is meant to rest onto of. I can already tell that my bite has changed drastically and it has only been just over a week since I got my splint! My jaw is still in some pain, but my symptoms have improved dramatically! I will go back in two weeks to get the splint adjusted and he mentioned that he may do a botox injection in my chin because the muscles there are constantly spasming. With these muscles constantly tight they are part of the reason my jaw is being pulled out of proper alignment. I am so grateful that we found someone (finally!) who can help me! Jaw pain and teeth grinding was the first problem that I was diagnosed with when I was a young teenager, so proper treatment has been a long time coming!

We are still waiting to hear if my health insurance company will pay for the splint and office visits or not, so please keep your fingers crossed that they will!