We have here a list of doctors who are there because one of us, or some of us, have seen him/her and they KNOW TOS. Most doctors, no matter what specialty, know TOS, and even less know neurogenic TOS. A few docs know to look for vascular TOS, and docs who say they know TOS, after they give me the usual med-school description, (which sounds more like ortho shoulder problems), clearly reflect to me that they DON'T know TOS. So finding a knowledgeable doctor is a BIG problem for us.

I do NOT think TOS is OVER-diagnosed. My proof is that during my first year and half of being sick, I went to an ortho hand specialist as my primary doc. As I used to wait in my cubicle, to see the doctor, I'd hear him talking to other women (they just happened to all be women) who were telling him the SAME symptoms I was having, and he was saying, "uh, gee, I just don't know." And they'd ask him intelligent questions, about why PT was hurting them, or why after carpal tunnel did they have worse symptoms, and symptoms of loss of use of hand, headaches, fatigue...and he was as dumb as a ROCK about it all...now I can see that they had TOS like I did, and that it was from our jobs at long hours of computing...(I'd hear them talking about their problems with their computer use at the job.) So no, I don't think TOS is OVER diagnosed at all, and in fact, I bet there are more people stuck with TOS who are being pushed around by doctors, or disbelieved, or called "drug seeking", when in fact, they have developed neuro TOS and are suffering.

I will post my usual post here about what you need to have tested, and why.

Testing is VERY important, because IF you have some OTHER EASIER reason for your symptoms, TOS is the LAST thing you want to have.

I personally think the vascular doctors in Denver, Annest, Brantigan, Sanders, and Ahn in LA, and Togut in Penn., are your BEST ways to get a diagnosis for sure. These docs do NOT do unnecessary surgery. In fact, Brantigan refused to do surgery for me, because he felt the RSD and possible rheumy disease would impede any recovery. Annest DID do surgery on me, because he and I agreed that even 10% improvement was worth it for me, and because I was willing to risk the surgery with rampant RSD. And surgery did take away all headaches for about a year, and same for RSD, although both are now back, and my TOS is progressing...I did have a "brain swelling" feeling that is just now starting to come back - but that's now been two years of a break.

So surgery was worth it for me.