To be honest, no one knows everything there is to know about dystonia- what causes it, how to diagnose it, how to treat it. There is so much speculation that we could go on for hours discussing all the various issues. However, there is one thing that I can say I have observed for sure. In almost every case- that’s about 95% of the time- the articular discs in the jaw joints are out of place, i.e. they are displaced. Unfortunately, most of the doctors out in the real world have no understanding of TMJ disorders- it’s not in their wheelhouse. They tell me this is one of those ‘in between’ medical and dental problems- kind of like the middle of the desert on a horse with no name (reference: 70’s band called America). Anyway, you get the picture. So I really cannot fault anyone for not knowing where to turn when it comes to dystonia.
As many of you dystonia sufferers already know, you go to the chiropractor to get your neck snapped and when that does not work you go to the physical therapist to get the neck and the back worked on. When none of that works and by now your head and neck are bent to the side, you go to the neurologist for Neurontin or whatever drug du jour they recommend. Don’t get me wrong folks- the doctors are ALL trying to help you get better based on their knowledge base. Then after years of pain, embarrassment, and even thoughts of depression and giving up, they google their symptoms. And lo and behold, little old Dr. Brown shows up on their screen. At first, they think it’s snake oil when they see my videos, but then they delve more into the website and realize that this guy just might be legit. Then they get the nerve up to call my office and talk to my team and realize that the ladies they are speaking to really understand them and want to help. It’s looking more promising now folks.
And one day that person shows up at my office after years and years and thousands of dollars gone, and I examine them. Most of them are not able to open their mouth fully. The xray shows that most of them have severely distorted cranial bones as well. And then the MRI is ordered and this shows about 95% of the time that the discs in the jaw joints are out of place! It’s a home run on the diagnosis board! But then the reality kicks in. I have to explain to Cindy Lou that it is highly likely there could be permanent nerve damage from the neck and head being bent to the side all these years. I try not to say ‘I wish I met you a few decades ago’ but that is often what I am thinking. So now we move forward. That person will need a splint to take the pressure off the jaw joints, most likely. And now that the pressure is reduced, this is when good physical therapy will really make a difference.
You see, dear reader, I believe the dystonic starter event began many years ago. It is possible that a slight accident or hit to the jaw could have ‘popped’ the disc out of place and this is now causing the skull to tip to the side, which then pulls on the neck. Please check out the xray below of one of our cases. This patient was not even diagnosed with dystonia, but I believe we can call this perhaps a ‘pre-dystonia’ patient. When I met her, her complaints were head and neck pain. The MRI showed definitive displacement of the jaw joint discs. We treated the discs and cranial bone displacements for about a year and as you can see in the xray on the right, she now lines up a lot better.
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Of course, I cannot promise everyone the same results, but more often than not I am able to improve the situation and give the person a better life. So if you or anyone you know suffers the pain, the embarrassment of dystonia, be sure to tell them to consider that the discs in the jaw joints just might be the culprits, or at least highly contributory to their problems.