Cervical Dystonia/Torticollis

I've not been dx'd with that specific disorder, but I have had 3 botox injections. Actually, I just had them Friday! I have bulging discs in C4-6, straighting of the curve, OA, bones spurs & stenosis in the neck. I had the injections in my trigger points of the trapezius (bi-lateral) & the right scapula. The only one that really hurt is the scapula & it was nothing in comparison with my previous SI nerve blocks. The relief was instantanious! My neck & shoulder muscles relaxed immediately, which they've not done in years. I need them every 2 mths, and will not hesitiate. I also had 4 cortisone nerve blocks in the neck & occipital region the month before, which helped a great deal, but were very short term in terms of length of time.

I highly recommend botox. I don't know how long it will last, but my upper back pain level went from a 9 1/2 to a 3-4 instantly.

Pam my neighbor had Botox injections for her neck and she did really well. Hers were done by her pain mgt dr and her ins did pay for it. Botox is being used alot these days so maybe your ins will pay. All you have to do is call them or if they are online you can find out. Good luck. Susie

I've lived with this condition since the late 90's, and it became progressively worse. You don't have to live with the pain!! First off, you should see a neurologist for an official diagnosis of spasmodic torticollis. They will advise you from there, but yes, botox injections are the best relief known. I believe the sooner you get this treatment, the better. I delayed for a very long time, and allowed my condition to get much worse. It started with a barely noticeable pulling at first, but now it is constant. It became almost impossible for me to drive or function, till I got the botox injections. Your insurance should pay at least part of this expense. It's costly, but the relief is well worth it. I've also been getting acupuncture for years to help keep my pain levels down... it did help with the pain management but not the twisting and pulling. I think you'll find botox will bring great relief. And I'm not sure, but I think I've heard that the sooner you get treatment, you could slow down the progression of the condition... so don't wait like I did.

I realize you posted this months ago, so this may be a late response... but if you're still around, let us know how you're doing! Wish you the best.

I began having problems with muscle spasms- blepharospasms, hemi facial spasms, cervical dystonia and neck/ shoulder/ upper back pain.

I have had 2 rounds of botox, the last round was not beneficial at all. I got about 3.5 weeks partial relief. I am scheduled to have a third round in April with a neurologist instead of a pain doc. I have tried several different types of therapy, medication, injection, massage.... So far not much of anything has helped. I just began PT, my therapist was kind enough to advise me that I have mild- moderate bone spurs in c-4-5 and c-5-6. Those showed up on my MRI but the neuro didn't tell me about that, how nice... I have had a lot of mobility problems in my neck, shoulders dute to my trapezius muschle going numb, feeling like it's on fire, or burning like crazy. My shoulders have rounded forward to compensate and I have lost a tremendous amount of strength in my upper back. I have a tension headache for about 5 days out of the week. MS, Huntingtons, Wilsons were ruled out but I have some of the early signs of Parkinsons.... I am 27. Scary. I have been dealing with this now since I was 22. Aren't I a bit young for all of this?
I exercise regularly and eat well most of the time. I have a desk job which kills my upper back, but it's a pay check and health insurance.... can't get treatment without that.
Botox, baclofen (not much improvement), skelaxin (no improvement), klonopin (some improvement), Tegretol (ggreat improvement, highly allergic), Dilantin (still new, some imporvement), Celexa and Welbutrin.