Proper VTOS Surgery
 

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.

i just know they said my artery is goes down in size in the thoracic outlet and then goes back up in size once out of there. i asked about the vein and nerves but they said they cannot tell about nerves (don't show up on the can) but it is assumed that they are affected too. they said they don't look at vein cause it is not that good of a bench mark. so i guess i have atos and ntos? who knows.

I cancelled my surgery that was scheduled for today and went and got another opinion. This surgeon said essentially everything everyone has done (or actually not done) over the last 12 weeks has been a waste of time and really screwed me. He was horrified at the lack of diagnostic abilities, poor treatments and inadequate tests that were run. This guy has some good experience with TOS and we are going to do another venogram, but this time using a small camera to see what kind of shape my vein is in. My surgeon is actually going to be there to make sure they don't screw this one up. After he see what's going on, we will look at interventions.

FWIW......He stated stents should never be used for these procedures as they almost always fail (even after decompression). For those with docs that are not listening to you.......MAKE THEM LISTEN OR FIND ANOTHER DOC!! According to my surgeon, the longer this is put off, the more damage can happen in the vein. I have been out of work for 12 weeks for nothing. I am getting ready to lose my job and insurance because of improper diagnosis and treatments. Do not let this happen to you!