I have this problem too. I have TOS and my Dr told me that surgery is not an option. Most days if I am grocery shopping I have to have some one else with me to push the cart, since the pain is intense.
But I have found something that seems to work for me. I haven't taken any pain meds for over a week now. I found a massager that does deep tissue massage, it looks like a vest and I don't need to hold it with my hands. So far if I am in pain I use the massager for 10 min and I feel so much better. The first time that I used it my pain was off the scale, but by the next morning it was at a 3! Big difference!
Hope you find relief!

Can you share:

Product name? URL? Place of purchase?

"I have arterial compression on both sides, with the left being worse. Therapy seemed to help the right side, but surgery was needed on the left. I had the surgery on the left in Sept. 2011. I could not get off the couch. If I turned my head or raised my left arm, I felt like I was going to pass out. My verterbal artery would completely stop flowing. The doctor said it was very rare, but had seen it before and actually thought I was going to have reverse flow which she seen only once. Still have a lot of pain and spasms in muscles and dizziness on occasion, but I can function a little bit better. Still can not work."

I'm so glad I saw your post. I have bilateral arterial and venous, also worse on the left side. I researched on the internet (those words that some doctors hate to hear!) and I found that arterial TOS can cause subclavian steal syndrome (I think the same think you're describing), which fit my symptoms exactly. When I lifted my arms to wash my hair, I started to pass out, as well as get extremely nauseated. My thoracic surgeon confirmed this possible diagnosis, but the neurologist I saw said it is anatomically impossible. I've had the most horriffic luck and advice from doctors about this TOS that honestly I trust my own research most of all. But what most interests me about your post is the REVERSE (or retrograde) FLOW issue! I think I may have this. I researched it, and I know it's extremely rare. I had a doppler ultrasound of my brain, and it showed microemboli (very tiny blood clots) floating around in my middle cerebral artery. This test has a high false-positive rate, but I read that retrograde flow with TOS (and compressed/damaged vessels) can send microemboli into the brain. PLUS, I found out that I have a patent foramen ovale (a small hole within the heart which many people have that is normally harmless), that makes the risk of a massive stroke higher if you have emboli in your body. If you could share with me any additional details about your reverse flow, etc. I would so grateful as my doctor is not agreeing with me on this, and I know I'm right :-) And, I will be getting partial rib resections on both sides in the coming months. I have no problems with turning my head--it's just raising my arms that makes me woozy.

chroma, I agree with everything you say. A person's "frame size" is completely irrelevant. I have read that if a woman has very large breasts (which may pull her shoulders downwards), that may aggravate TOS, but I don't know if that has been proven. A person's posture (slouching, forward-rolling shoulders) may not be good for TOS), but I don't see how one's body size would matter (please correct me if I'm wrong). No strengthening! How does the doctor not know that? I think it should be gentle stretching and nerve-gliding (again, correct me please).

I don't see anything to correct.

Re: "neurologist I saw said it is anatomically impossible", anatomy can actually varies between people! For example, I read some case studies by a vascular MD who operated on several people who had dizziness caused by neck position. In addition to finding the occasional anomalous fibrous band, he found that some people had muscles in the neck that originated off a vertebra that was one higher or lower than normal. This made them more susceptible to compression of adjacent blood vessels.

I was thinking I might find where that doctor practiced and go visit him. Then I realized the paper was published in the 1960's.

We also know that some people have cervical ribs. And some people don't have a subclavius muscle. And so on.

While you're fighting your way through the medical system, two things that can help are to get religion about posture and about muscle relaxation. Also, see if propping up your shoulder girdle (by propping up your upper arms with say pillows) helps. Maybe we already covered that in this thread. Haven't checked; I'm tired. Good luck.

I really do not know to much about it. I check the internet all the time, and found my TOS. I scheduled my appt. with the vascular doc, after another doc said not to make any other appts. The doctor do not know everything, that is why they call it Practicing medicine.

The massager is called Tapping Massager by Quantum. I bought it at a store called Showcase, it's one of those As Seen on TV stores. It says it is distributed exclusively by Showcase. I don't know if they have them in the States, but if you look it up online, there may be a distributor there. I only paid $20 CDN.
Hope that helps.

So I haven't been on in a while. I have seen a new dr who prescribed Neurontin for me. It seemed to have helped. The issue is, I have had to increase my dose after 3 months and I have a feeling that the dose will be increased again, approx 3 months later again. Now I am starting to feel some pain in the left arm as well. My husband suggested that this could be because I am using the left arm more, which is possible. But I am very right hand dominant. I still do lots of stuff with my right arm because I just can't do it with my left. The new pain in the left arm has been going on for a month or so. I don't think it is because of overuse because the pain is very similar to the right arm pain. I'm tired of living off of muscle relaxers and Lortab and Neurontin. I am now on BP meds, never had issues before. Any suggestions or comments would be appreciated..

Basically the medications don't fix anything, they just help to block the pain.

And when you feel more able to do things, we tend to do them.
But if no therapy or self care is being done also, TOS does tend to progress and not stop or reverse.

Expert therapy & self /home work is really needed, but you need to find a really good person to help you get started in the right direction.