I totally agree and would tell anybody else facing this condition and situation the same advice. But, in my case . . .

This is my 7th opinion (phew! - and that's taken almost a year). I've talked to Dr. Sanders, had all my imaging and tests (including xray, CT, MRI, angio and ultrasound), seen an internist, vascular and thoracic specialists/surgeons, a cardiologist (b/c I have tachycardia and transient hypertension also, supposedly as a result of the TOS causing a small aneurysm of the subclavian artery at the brachial plexus), a neurologist, and now the 30-year cardiovascular surgeon with several hundred of these surgeries under his belt (of course, usually for neurogenic TOS).

I've done 3 1/2 months of PT with zero-relief and change. I'm going on 11 months of research and trying to avoid having surgery. This is a drastic measure that I don't take lightly. There is no way I would subject myself to such debilitation (even if only temporary) and likely life-changing surgery without serious consideration.

If I was dealing with the neuralgia only, I would certainly be adamantly looking for other ways to deal with the pain, trying other medications, and looking here on this forum for all of the great ideas for pain relief, etc. But that is the least of my worries with an arterial aneurysm forming, tachycardia, hypertension, mild chest pain, venous congestion, and my hand turning dark purple after taking BP.

The surgeon said I don't have to do the surgery now, but I will have to do the surgery. He said it's elective until the day they take my BP and my arm does not return to a normal color due to a blood clot and then I'm rushed in for emergency surgery to try and save my hand and/or arm. And that's if I'm lucky enough to have the clot in my hand/arm, and not on it's way to my brain.

All of this considered, I am opting for the surgery. I am 38, have a husband and 5 children, and choose not to mess around with blood clots and the risk of stroke. Doc says he can't even give a decent prognosis until he's in there. He plans to do the rib resection and scalenectomy, remove any scar tissue, and repair the subclavian artery and any other damaged vessels with stents, etc.

Unfortunately, I don't know anybody with these same vascular issues who has had the surgery and can offer their insight about how their procedure went, and some idea of what I can expect post-op (like time in hospital, initial and long-term recovery at home, success of outcome, etc.). I understand that every situation is completely unique, but just trying to get at least a vague idea.

Thank you so much for your input - and any further input too! I'm so thankful for this forum!

Carrie