Fascinating stuff here Shelly - thank you for your detailed research!!!

Anne

I was diagnosed in '06 by Dr. J with cervical dystonia and TOS. You have piqued my interest, now i have to do more research on this. I'll share whatever i can find.

HOLY **** SHELLEY!
First of all...I am so, so sorry you went through this sad physical demanding horror. However, I look at it as putting the docs on the spot having to actually listen, bow to you & cooperate.

Second... your tenacity, intelligence, research & incredible breakthrough you may have found as a contributing factor to TOS is AMAZING.

Your a forensic researcher dear one.
xxoo cyn

I was diagnosed with cervical dystonia by a neurologist a month ago

Hi shelly,

this is very interesting and sorry you are going thru all this now. I too see Dr. J and he gave me a diagnosis of Cervical Dystonia (which is basically when your neck is stuck to one side or you have spasms )and TOS because CV the diagnosis code that is approved for botox by the FDA. TOS is not so thats how they get around it.I know because I dont have CV symptoms and I asked dr. j about it. Later I had to fight with my insurance to get the botox covered, and I won because of the CV diag.

I have looked into Valtrex for nerve pain before-I have herpes and take valtrex for outbreaks and it helps the nerve pain that goes down my leg .I have mentioned it to some dr's as maybe helping with the nerve pain from TOs but never got any response.I will mention to Dr. j next time I see him My primary has suggested taking one a day to prevent outbreaks. (500 mg) .I think I will try taking it regularly to see if it helps the nerve pain in my neck and shoulder. I saw another article that I will try to find that relates Valtrex for Shingles with TOS. I will try to post it.

Whats also interesting is that there is a theory that Breast Cancer is caused by a virus. I have BC and also sinus issues, so in my mind I feel it could all be connected to a virus and/or inflammation. I would really like to find an integrative health Dr. who can help me with all of these things.

Questions:

How much is a high dose?
Who is your PT that is interested in the virus connection? Are you happy with him/her? I cant remember if you are still in S.M. I am in Westside too.

Thanks, JKL

Shelley hasn't logged in for awhile (2011), you might try to PM her - perhaps her email is still the same.
I don't remember if she moved or not.

Oh I hadnt realized this was an old thread. A good thing to look into though, i will still try to find the article I mantioned,

Sub-clinical viruses can cause inflammation. I've read of cases in which Valtrex made a difference. I had some cold sores prior to my last set of surgeries and my primary wrote me an Rx but the Valtrex had no effect on my neuropathic pain. It was worth a try.

Dr. Jordan Dx me with Cervical Dystonia but I saw a movement disorder specialist who said I do not have true dystonia, but myofacial tension.

I was diagnosed cervical dystonia in June 2013.

After 20 years, I think it's a label. The neck spasms pull the cervical spine into a reverse lordosis, or head is pulled to the side and down from cervical spine short bands to the collar bone.

I met a few people with dystonia, I don't know if it is degrees or misdiax, but they are severally twisted and spastic, not just what I have seen with traditional TOS lordosis.

I realize you can find a PT or a chiropractor hat ill say TOS....the doctors only familiar with the brachial entrapment, non vascular, don't want to give a TOS diagx. You will hear lots of labels.

A detailed pain diary, meds, pain levels/activity, body area affected kept is you're best friend. Keep copies of all test, MRI, ex rays, blood work etc.
especially the first symptoms, what happened, how treated.