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Date of last update: 10/04/2017.

Forum Name: Neurology Topics

Question: spasmodictorticollis ?

 ruthanntscherne - Mon Apr 20, 2009 9:16 am

I have been suffering for 2 yrs. now.I have lost my job and I have been to numerous doctors, specialist, physicians and chiropractors. I am totally lost now and really need to know that I can narrow things down. I was reading about the ST. or dystonia. What I do know is that there are different forms and levels. So I really wanted some input from someone else. My question is, is this a possible problem for me and where would I find the best solution? I have had 2 discectomies, one in 95 and one in 98. I have had sometimes severe neck pain and muscle spasms and other nerve twitching problems. I just had surgery in Nov. 08 to put my right hand thumb back in alignment. Now I have left shoulder pain, really severe at times and both my left hand and leg are prone to constant nerve, not muscle, but nerve movement, constant. Until I sleep. So short of sleeping 24 hours a day what can I do? This has become increasingly worse over time. I have heard all the doctors that I have worked with tell me what I don't have so this time I would like to find out what I do have. Thank You
 John Kenyon, CNA - Thu Apr 30, 2009 8:45 pm

User avatar Hello --

This (SP) certainly is a possibility for you and should be explored, as it is treatable even though the cause is often unclear. There are surgical and botox approaches to this, which sometimes allows the sufferer some options. It's also possible these (selective denervation surgically, or botox to stop the spasm) might work for you even if this turns out not to be provable SP.

Where to find the best solution, medically, would depend upon where you live and/or where you're willing/able to travel. There are a number of centers in the US which hold great promise for this sort of thing, and a number of neurologists and neurosurgeons who could probably offer you a great deal of help.

I hope this is useful information. I wish I could give you something more concrete, but of course it is impossible to diagnose on line and without a hands-on exam and the appropriate technical tests it's impossible to do more than guess. The best thing would be to find an accomplished group at a center with a national reputation and go from there.

Good luck to you and please follow up with us here as needed.

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