The month of September is Dystonia Awareness month. So little seems to really be known about dystonia and it seems most practitioners have difficulty in diagnosing and treating this awful and debilitating disease. Almost every day of the week I see a patient or two with dystonia and it pains me to meet them and see how much they have suffered and for so many years. As it turns out, in many of these cases there is likely an underlying TMJ problem, i.e. the articular discs in the TMJ’s are out of place.
In just about every case of dystonia that I see, the discs are out of place and cause damage to the surrounding tissue, nerves, blood vessels, etc. If I told you that you had a slipped disc in your lower back, it would make total sense in explaining the leg and back pain that you are experiencing. Well, if the discs in the jaw joints are out of place, this can cause serious health problems. When we alleviate the pressure on the articular discs, headaches go away. Back pain subsides. Neck pain abates, and the neck can gradually go back into proper position. That’s right, dystonia can be fixed, but it will take time depending on how much damage is present and how long it has been there. That is oftentimes the key: How long and how much damage is there? If the damage has become so extensive that nerves and muscles are damaged beyond repair, then the hope for resolution is not as high and that must be recognized.
Because our office sees so many dystonia patients, we know how to diagnose what is wrong from our viewpoint and then work with the physical therapist or osteopath to help re-align the neck over the course of time, which might be years in some cases. I have a number of patients who are in their 60’s and have had dystonia for decades. I tell them that if we can unwind the problems, it could take several years of treatment. For example, this week I saw perhaps 8-10 dystonia cases and most were close to a year in treatment. They all had improved a fair amount, but it was obvious that the discs were still out of place. In some of these cases, we choose to do the TMJ surgery to fix the displaced discs, in other cases there is just too much damage and we will keep them in appliances forever to maintain the stability we have gained. Don’t get me wrong, many of them get a lot better, but the underlying damage is still there so these patients are likely going to be wearing devices for a lifetime as I adjust the appliances and keep them stable. I guess it’s not too bad considering they are doing better.
One major issue when dealing with dystonia is that you cannot simply make a TMJ appliance that is up to final height at the very beginning. I see this too many times, a new patient comes to see me and is wearing a device that is 10mm high made by their dentist. This is so wrong for so many reasons, but basically such a height so fast will actually hurt the cervical spine because what you do to the front of the face will affect the back of the head. What should be done? You need to raise the appliance slowly over time, work with a body worker to handle the changes, and as the months go by raise the appliance to a proper height that provides comfort and support.
As you can see, dealing with dystonia is multi-faceted. It takes time. It takes patience.