I was initially diagnosed with torticollis at age 19, intermittant occurrences of it that lasted several days. Twenty-six years later I've had rib resection-diagnosed with TOS, which has not resolved my ear/head/neck pain...so this is very interesting info for me-thank you for taking the time to post it!!!!!

A tos specialist diagnosed me with this but I thought it was the part of same thing...How many people with tos have cervical dystonia too?
The scalene removal would resolve it right...no muscles to spasm?

Many doctors will use the term dystonia but the spasms we often have w/TOS is not true dystonia. Dystonia/Torticollis is a movement disorder and generally results in a tilt to one side and possibly uncontrollable jerks. This is treated often with ultrasound guided Botox to specific muscles. I don't know if the scalenes are often (or ever) implicated with dystonia, so scalenectomy is not a treatment for it.

Misdiagnosed for cervical dystonia left side in 2007 and had Botox injections for that. It was a catastrophe. Things gradually got worse. Maybe this was also the blessing since I then really had to fight hard and figure out, what was wrong. As it now turned out, it was Arterial TOS and thus a secondary dystonia (so called peripherally-induced). After surgery, the symptoms are mostly gone. This is for sure a rare constellation but make sure to get the right clinical tests and appropriate treatment. Always question hard your neurolgists diagnosis.

Check this out: Spasmodic torticollis due to neurovascular compression of the spinal accessory nerve by the anteroinferior cerebellar artery: case report.
http://www.ncbi.nlm.nih.gov/pubmed/10981767

when i had first rib resection in '08, I also had scalene removal and it did not help my tos or torticolis long term. Hmmm...? I do wonder how many tosers also have wry neck or torticollis??

Shelley - I just ran across your thread and am very interested in hearing more about this. I hope you are still on this site (I see where this post is about four years old) and you will contact me! I recently visited a MD who does integrative medicine and he thinks my Spasmodic Torticollis is caused from a virus. I also see a naturopath and through process of elimination in looking at the viruses that show up on her Orion Bioscan machine, we think that if my ST/CD is caused from a virus that it's the chicken pox virus. I had a very bad case of chicken pox when I as a teenager.