I was recently diagnosed with bilateral venous and arterial TOS, for which I will have one rib surgery in January, and then rib surgery on the other side about one month after that. This happened to me as a result of severe whiplash, and I have other neurological issues not commonly associated with TOS. I researched my strange symptoms on the internet, and everything pointed to TOS. I went to two vascular surgeons who told me I didn't have it (even though I had a positive ultrasound and CT!). I was, and am, very ill, and I KNEW I had it, and if I listened to those clowns I'd drop dead from a stroke or aneurysm eventually. So, thankfully, I finally ended up seeing an outstanding thoracic surgeon who told me, even with the positive ultrasound and CT, the only way to know for sure if you have venous and arterial TOS is to get an arteriogram (angiogram) and venogram. Those are the "gold standard" tests. Period. The tests are not without risk as they are invasive (but I didn't find them painful), but I can't imagine any reputable surgeon doing TOS surgery without having seen the results of those tests. Mine were very bad, with the subclavian veins and arteries ranging from completely to moderately occluded. In my case, since it was caught fairly early, I should only need the surgery itself and no vein/artery repair. My surgeon does robotically assisted surgery, and in my case, he will not remove the entire top first ribs, but just a part of each to open up the space where the arteries and veins are. I am a doctor's worst nightmare, in that I will not take "no" for an answer if I believe what they're telling me is not correct. Also, I literally became an expert on TOS through my internet research, so much so that I knew far more than those two vascular surgeons. That is a disgrace. They should have a full understanding of this syndrome; it is not some rare tropical disease--it is VASCULAR in nature after all! I don't know where you live, but if it is at all possible, you need to see a TOS specialist, otherwise, from my experience, you are completely wasting your time and money. Other doctors have little expertise in it. Unfortunately, these specialists are few and far between, but it is worth seeing one to get the situation resolved quickly so the clock does not keep ticking on forever and even further damage is done to your vessels.

The doctor saying you should wait until this is more severe is, frankly, negligent and dangerous. If you indeed have it, the surgery is far less complicated when it is done in the early stages of TOS. I can't fathom his thought process in saying something like that. Right now, my arteries and veins are "just" compressed, but not "damaged," but if they were damaged, I would need the whole repair thing as well; I'm not sure what they do for that--maybe bypasses or use artificial material to patch up the vessels.