Hi all,

I've been browsing for a while and am so grateful to have found this forum. I am a 22 year old classical musician just diagnosed with VTOS, surgery has been recommended, and I am unsure of where to turn and hoping you could help.

I was diagnosed with neurogenic TOS and an ulnar nerve entrapment almost a year ago, saw 4 PT's (some PT helped but symptoms never directly corresponded to the work- more on this in a minute), and after a severe flare-up a few weeks ago that could not be explained by any unusual or precipitating activities, had another contrast MRI that showed crimping of the vein when I raised my arm above my head. Ultrasound confirmed reduced blood flow to the veins. My doctor, suspecting VTOS, sent me to a vascular surgeon who recommended a venogram. At the time of the venogram this past week, I had no symptoms and was convinced it would be fine- different from the MRI two weeks ago. However, the venogram showed that when contrast is injected, there is slight narrowing of the vein when my arm is down, severe narrowing when arm is lifted overhead, and scarring of the vein. The doctor said this puts me at a risk for blood clots and recommended surgery. Anyone else have this or could explain it better to me?

I had all the classic symptoms from the beginning- numbness and tingling in my hand and 4th/5th fingers (my 4th finger would go completely numb at times and mobility and control over it were limited), and then starting a few weeks ago, burning shooting nerve pain and swelling. All of these have since abated but I'm worried about another flare up. (Overdoing it obviously aggravates my symptoms as does severe emotional stress- I lost my mother to ALS a year and a half ago, around the time my TOS started and I've done extensive work on the psychological component to the injury. I finally came to the conclusion that the reasons I wasn't getting better were emotionally-related, my body expressing the true feelings I couldn't voice and as did extensive work on this, my symptoms drastically improved. I have not had any major flare-ups since this realization, but in the recent past before that, I've had severe flare ups that seem to come out of nowhere, which was new.)

I have one opinion already for surgery- first rib removal, scalenectomy, and possible angioplasty of the subclavicular vein. Any thoughts?? I am terrified of the surgery and the potential risks it poses, especially since I am a musician, very sensitive, and my breathing and nerves are crucial. It could affect my career and my dream.

Can anyone with experience weigh in on how necessary it was and how effective? At this point, I don't know if "potential risk of blood clot in the future" is 100% reason for this surgery, especially because my symptoms vary of late (days where I feel almost normal, days where I feel bad) but I don't know much about it and was wondering if someone with experience might have some thoughts or insight they might be able to share with me...

I'm scheduled to see Dr. Donahue at MGH on Monday and have read wonderful things about him on this forum.

I would be so grateful for your help and advice...

I already sent you a msg but just read through this as well. The cause is not emotional unfortunately. The severity of VTOS increases with activities where arms are raised above head. More common in athletes due to repetition of motion- tennis, water polo, etc. Washing my hair still causes pain and flares. The big problem is most tests will not show any compression! They have you laying with arms in a position that minimizes this effect. If they could take a test while you are over-extending it would show something different. Between my two surgeries I was on coumadin (blood thinner) for 3 months. There was a bad incident where I ended up at the ER- I could feel the vein pinched on the right side. The tests did not show this and I had no clots so I was sent home. Turns out my INR was almost a 6. (therapeutic blood level should be btwn 2-3). So if my blood had not been so thin I probably would have clotted on that side as well. Two weeks later I had that rib resection. Just remember to listen to your body. Doctors can only provide their best medical opinion. They cannot tell what you are really going through- especially since so little is really understood about TOS. Every time you lift your arms there could be compression on the vein...it may never clot, though.

Thank you so much for this- I am so grateful! And it is also so helpful to hear (as I come back from my I-wish-I-could-control-this-by-using-willpower reverie)...it also now helps me make sense of why they are recommending the surgery from a purely anatomical perspective. The doctor explained it but after the words "surgery" and "rib resection" were mentioned, I couldn't fully hear what he was saying about why it was necessary because I was just trying to process. Now I also understand why he was recommending surgery- because the activities I do most induce that compression and it got to the point where even taking a lot of time off from those activities didn't help.

Exactly- it's just re-opening a wound when you play.

You may have stated this somewhere else, but what instrument do you play?

I'm a flutist

gawd this thing destroys careers. i gave up my career.