Hi Camick,

I have both TOS and RSD (and Fibromyalgia to complete the trinity.....seems like the 3 go together a lot).

I think part of your focus should be on finding out what type of TOS he has......if it is neuro, venous, or arterial. If it is primarily neuro, like me, and pain is the biggest issue, you have to consider that the surgery might make the pain even worse. If it is primarily venous and he is at high risk for clots, the surgery might be necessary to prevent him from shooting a lethal clot.

If he does need surgery, they can take the RSD into account and do a regional anesthetic block to help decrease the likelihood of the RSD spreading/getting worse.

I would want to be evaluated by a doctor who understands BOTH diagnoses very well.

I would be reluctant to go by the decision of a thoracic surgeon alone. I don't think a surgeon would be very experienced in dealing with RSD and my fear would be he might be gung ho to cut, because that's what they do......or just scared off by a complicated case. I'd be afraid the surgeon would be thinking of his own success rate in deciding for or against surgery, more than focusing on what is best for your husband's predicament.

I hope that doesn't sound too anti-surgeon, if one happens to be reading this. There are many threads on the TOS board recommending certain doctors who specialize in the treatment and possible surgery of TOS patients. I would be more comfortable listening to their decision than of a thoracic surgeon who does all kinds of thoracic surgery and doesn't follow the patients.

Just my 2 cents.

Good luck with your research. Don't rush into any decision.