My surgeon called this morning (2 days before surgery) and stated that decompression surgery will most likely NOT help with my VTOS as I have compression and scar tissue of the vein (no DVT). In addition, she stated that during surgery it is possible that there could be damage to the collateral veins that have formed, leading to even worse circulation!! She further stated that any repairs to the vein would no be long lived as the venous system is "low pressure" (vs. high pressure arteries) and repairs tend to fail. Why do I feel like I know more about VTOS than these "professionals". I could have told them this 6 weeks ago!! Anyway, I have talked to a few of the leading guys in the country, and have scheduled an appt with a specialist who is more familiar with this.

Can anyone here tell me how their VTOS was repaired? Specifically those that needed vein repair or did not present with a clot. Thanks all!!

No clot here but no vein repair. They took the scalenes and ribs and it resolved.

Just had my six month checkup with Dr Thompson last week, he operated on my right upper extremity on Oct 4 2012. He removed my first rib, scalene muscles and replaced part of my vein with a frozen vein that had been donated. I am happy to say all is well and I have full use of my arm again.

I would highly recommend Dr Thompson in St Louis.

Regis

Thanks all. What a mess. I actually spoke with Dr. Thompson on the phone last week and I may just end up going to see him.

Did you have 100% compression/scar tissue, etc.? Did you have collaterals?

how does a person know if they have VTOS, ATOS, or NTOS?

A doctor will have to tell you. The symptoms can sometimes get a little fuzzy. Doppler studies will show if you have A or V TOS, NTOS has to be diagnosed via exam and process of elimination though if you have A or V TOS it can be assumed that you have N TOS without the process of elimination.

My surgeon was... less than forthcoming about what he found when he was inside. I asked a lot of questions and he seemed genuinely confused as to why I would ask and I don't think he thought I was capable of understanding a real answer so he kept insisting that he fixed the problem. I've requested a copy of my record to include surgical notes so I'll know more at that point but I am fairly certain that my compression was not 100% though it was significant and I did not have collaterals.

Can ntos progress to vtos or are they really separate things?

I don't really think of it as progression. There are three rope-like things going through a small space. The rope like things being the artery, the vein and the nerve. The compression in the area can easily cause any combination of the three to become compressed. The way you move, how much damage is done by the way you move, and other factors determines your symptoms but I don't really think it's too difficult for other things to get compressed once one is. However, nerves tend to be highly sensitive and it only takes a little to get them good and ticked off. That's why so many people have NTOS but not V or A TOS. I don't know how common it is to have A or V TOS without NTOS but it is very common to have NTOS without A or V because those take real, physical compression and not just rubbing it the wrong way.
So, to answer your question, over time you can end up with VTOS and not just NTOS because scar tissue can develop, more swelling, and a change in body mechanics that can cause VTOS but it's not really a "progression" in that, if you wait too long it's going to turn into something else.