Discussions that mention valium

Brain & Nervous System Disorders board

Hi Audrey

My husband has Spasmodic Torticollis also. He was diagnosed with it in Feb 1998, and is doing remarkably well now. The first course of treatment was medications (valium, anti-seizure meds etc), then he had the botox shots for about 7 months. His head would pull to the left and was extremely powerful and painful. After much research, I heard of the Selective Denervation surgery and we asked my husband's neurologist about it. He recommended a Dr. Carlos Arce in Jacksonville Fl (we live in MA). We were lucky enough to get an appt with him (he's an amazing man!) in October of 1998, and my husband underwent a 12 hour Selective Denervation surgery. He did have to go back a year later for another surgery because a nerve had gotten missed. He endured another 12 hour surgery, and during this one they actually removed his sterno mastoid (sp?) muscle completely. Today he still has to take muscle relaxers, and does not have full mobility to look to the left, but is as close to "cured" of this condition as can be I guess. He leads a pretty "normal" life. Recently he did have to start back on the botox shots for one little muscle that is spasming, but it is nowhere near as bad as the other were.
I know how this condition can affect your life, and it is so hard to cope with. Especially since hardly anyone has even heard of it. Please feel free to ask me any questions and let me know if I can be of any help. Years ago I was a member of a bulletin board dedicated to ST. I can't remember what the webpage was, but do a search to see if you can find anything like that. It always helps to talk with those who are going throug the same thing. I wish you the best of luck and will pray that you find some relief soon.