Dystonia and a link to TMJ

[PhilNorwich]

Interested to know if anyone on this forum has undergone treatment of their Temperomandibular Joint (TMJ) to help improve their dystonia symptoms?

Phil

[AllHis]

Hi Phil,

New here. I saw a neurologist today who asked if I had ever heard the word, "Dystonia" before. I had to have her write it down, because I wasn't hearing what she was saying.

My left jaw ( TMJ ) is displaced. My jaw and teeth are killing me!

My right side of my neck has been relentless for over a year. It is the doctor's opinion that the two a separate. She will try Botox for my neck (with my consent- thinking about it...) and have the oral surgeon treat my TMJ. But, I like you want to connect everything together. I had had some hearing loss in my right ear last summer, and the doctor is curious to see if Botox might restore my hearing.

The most strange thing is my heart palpitations when I try to sleep on my neck...

Up to this point, doctors all conclude anxiety disorder.

...I just don't think so.

How are you doing? Do you find the two to be connected? TMJ and Dystonia?

[PhilNorwich in reply to AllHis]

I am no expert in this field, but have tracked some down in the UK after seeing miraculous cures on YouTube. I didn't expect miracles but thought it was worth exploring further. I found Dr Andre Hedger in Surrey who works on the connection between TMJ issues and Dystonia (it also seems to have a big link to Tourettes too), and I am having my mouth reshaped using a mouthpiece and braces.

I am not yet cured (and don't know if I will be) but am no longer in pain, don't need Botox, and have reduced my Cervical Dystonia to a tremor. It's been a slow 2 years of improvement but I now believe there is something in it. There's a Facebook group called 'Dystonia, TMJ and the Connection' which is a good place to start

[AllHis in reply to PhilNorwich]

I'm happy for you.

How far into the "reshaping" are you?

My dentist suggested "changing my bite." He ground down a couple of back teeth and is having a new mouth piece made for me.

For TMJ displacement, I'm told they inject cortisone in there with the hope that a callus will form.

[Fieldholy in reply to AllHis]

Hi Phil

I have also been a patient of Andre Hedgers. Did your treatment work? I am 3 years down the road of being treated for Cervical Dystonia but has not seen any differences to my CD.

[PhilNorwich in reply to Fieldholy]

I completed treatment last year after 4 years of having my teeth reshaped and my jaw edged forward. Whilst I had the splint, I did see some improvement, but then slipped back as the treatment was coming to an end. It was hard to tell but I suspect the improvement was down to having something positive to focus on, combined with other treatments focussing on my posture. I was disappointed (understatement), but at least my teeth look better!I am currently working remotely with the STRC in New Mexico, which basically focusses on elongating the short muscles using stretches, and working on good posture. Early days but I have seen significant improvements, so I will stick with it. It's not a miracle cure, but long term gives you more control over the spasms and your position.

You've just got to keep trying stuff. Despair brings out the worst of dystonia, so work on being positive.