@88lance For me TOS causes arm pain, muscle spasms in my arms and hands, cold hands that turn bluish or purple from decreased circulation, neck spasms, muscular headaches on the back of my head, and some loss of coordination in my hands if it is bad. I get blotchy skin that my PT calls a vasomotor response. I don't get visual disturbances, but I also had a spine problem that was operated on for a collapsed C5/C6 disc that was compressing my spinal cord. With one side of my neck being tighter from TOS, it causes rotation of cervical vertebrae during a spasm. When C1 & C2 were independently rotated, that caused vertigo that came on when I looked upward at birds flying overhead. Essentially I was kinking an artery that was sending blood to my brain that was already stretched because of the rotated vertebrae. The vertebral artery runs through the sides of the cervical vertebrae. Getting my vertebrae correctly aligned with my physical therapist resolved the vertigo, and since my spine surgery, my neck is more stable and vertigo hasn't been an issue. I still can get rotated vertebrae which causes headaches, but I'm aware of when this starts to happen and can take corrective action. I do still get tight muscles through my neck and chest, and the incision scar from the spine surgery on the front of my neck makes it tighten up, so I frequently stretch that out. My PT does myofascial release therapy to keep the tissues and muscles looser. MFR has helped make my symptoms from TOS better.

I was a Mayo patient for spine surgery, and the vascular lab there also assessed my TOS and did Doppler studies with tiny blood pressure cuffs on my fingers while moving my arm and neck position. Some of this is posture related, and any forward slouching, and even worse... slouching with a forward head position makes the TOS worse. If I maintain good posture, I feel much better. It helps me a lot to maintain good core strength. I have a horse and do a lot of physical work in horse care and feeding, as well as trail riding which I do with good posture. That works my back and makes it stronger which supports my neck and spine and I have less neck pain.

You may also be interested in following Kjetil Larsen on facebook. He may also have posts listed as MSK Neurology. He posts unusual case studies kind of similar to your symptoms but with variations since no 2 patients are the same, and most of these patients have seen specialists who have missed the problem. Most often it's a problem of compression causing altered nerve conduction or circulation, and frequently it is linked to TOS. He is the author of the link and website that I included in my last post. He may answer you if you comment on his posts.

Specialists for TOS are hard to find, but a big teaching medical center that lists TOS as a condition that they treat should have some doctors who can diagnose and treat it.

Do you have a medical center that treats TOS near you? If not, would you be able to travel to see a specialist? The treatment can be just physical therapy and not surgery, as surgery creates scar tissue and can make TOS worse. Go to the best place you can find. That may be another angle to possibly be seen at Mayo if you wanted to apply again. Sometimes that works if you can find a problem that is within the expertise of a specific specialist. Once you are accepted and seen as a patient, that could lead to referrals to other departments based on what they find. One test for TOS is that the doctor listens to your pulse in your neck and when you turn your head or raise your arm, that pulse diminishes until it disappears. If that happens to you, you could apply to Mayo again for TOS for testing of circulation related to head, neck, and arm position. You may want to discuss this with a neurologist. Read everything and write down specific target questions that will get your doctors thinking along those lines like asking about subclavian steal syndrome and you're wondering if that could be part of your issues??? This makes sense to me because patients with TOS can easily pass out, and when that happens, vision does start to black out. You may be describing being on the edge of diminished circulation similar to someone who is fainting. I have seen this a lot because I used to fear doctors and pass out if something was going to hurt. My emotional response to fear was my body flipping a switch and causing blood vessels to dilate as a protective mechanism when blood pressure from stress was getting too high. If you are describing your experience like that, they may connect it to circulation fluctuations, but only do that if that is true for you in your experience of the symptoms.

In talking to your doctors, make sure it is always a question because your doctor has to diagnose this and you can't tell him what to do, but say you suspect it make be something like (fill in the blank) because you have symptoms that seem to match up, and how would he go about testing you to figure that out?