Deborah
You seem to be having all the classic symptoms of TOS, and if your neurologist is not listening to you - then you need to find a thoracic doctor that specializes in this area, and there are not many that do. I have extreme pain in both of my arms, my shoulders, neck and down to my mid back. I get muscle spasms so bad in my back that it presses against my diaphram making it difficult to breath. There are 2 types of TOS - vascular, in which the arteries that control the blood flow to your arms are entrapped, and neurogenic, involving the nerves. I have both. Surgery is of course the removal of the first rib on the side that is effected. What they do not tell is that though at first, it may not sound that difficult or complicated - make no mistake that it is extremely dangerous. In order to get to the bracial plexus, where the real damage is, they have to collapse your lung to reach the bracial plexus and the sympathtic nerve chain where there is no doubt scar tissue. The nerves in this area control many things, and they are surrounded by many muscles that they must go through. One of the things that occur in many people is severe bruising of the nerves which an lead to complications, some long term, others not. They are working very close to your diaphram, that in some people that I know personally, have endedup with their diaphram paralizied for a short time, or permentl - your diaphram is what controls your breathing. Also - if they suggest weight lifting as a form of physical therapy, they DO NOT KNOW ANYTHING ABOUT TOS. Weight lifting is the absolute wrong thing, your muscles and aterties are pinched off - trying to make them "work" with diminished flow will only biuld more scar tissue and possibly blood clots in the event it is vascular, and more nerve tearing in neurogenic. Please go and check out this forum that has hundreds of postings on TOS - questions and answers, it can give you names of doctors that deal ONLY in this area. One is: The Vascular Institute of the Rockies Dr. Annest - Brantigan - Synn - Gupta 2253 Downing Street Denver, Colorado 1-800-992-4676 Dr. Richard Sanders 4545 East 9th Avenue Denver, Colorado 1-303-388-6461 Dr. Hal Urschell Baylor University Texas Dr. Allan Togurt Philladelphia, Pennsylvania Please check this site for the forum I mentioned - and feel free to sign in (its free) so that you can ask additional questions. http://neuro-mancer.mgh.harvard.edu/cgi.bin/ultimate.cgi If you can't get to it that way - on your "search" - type in thoracic outlet syndrome, it will be the only one that comes up saying they have a forum and a chat room. It is run by Massachucetts General Hospital. If you have any other questions, please feel free to mail me : DKSfred@webtv.net Good luck, this is not an easy thing to have.