Hi Smuts,

Yes. That's what I was thinking, but then my surgeon told me about the collaterals and how sometimes they can develop to the extend to take the most job onto themselves. Nevertheless I think the surgery (if no complications) is the best way to go. My surgeon doesn't like to do it from armpit. He says it is clearer if you do the surgery 'from above' what is causing the compression. I am a bit concern about nerves going on in there - phrenic nerve, branchial, etc.. I don't like the risk of permanent damage that would affects lungs or arm. My surgeon did over 100 surgeries of this type. I suppose that's not a great number but in UK it is more than most.

How is your recovery going? Did you start workouts yet? Any pain, discomfort, issues, problems? How is you sleeping - I am a side sleeper.

Of course it is very hard to predict, but do you think that 3 weeks after the surgery I would be able to go back to work - I work in the office, but I don't need to use laptop all the time and I do move a lot - I do teaching.

Repair is venoplasty. That's done later, after surgery.

Corpse vein grafting is done primarily if the venoplasty doesn't help and the collaterals are insufficient for whatever. It's a little risky and doesn't always take. . . . My collaterals hold up pretty well. I have the option of doing another round of venoplasty if I want. And then we could consider grafting if I really needed it.

I'm too old to be a professional athlete, but I don't think I'd have a problem right now if I was. My collaterals are doing a good job. I've been doing some lifting. I'll try to drive my arm to total failure in a few weeks to see if there is much of a difference. I doubt that I'll notice anything that needs to be improved.

What risk is there to the vein grafting? What do you mean it doesn't always take?

Hi, I've been recently diagnosed with VTOS. I am currently on lovenox and am symptom free most of the time. I'm trying to decide between staying on blood thinners long term and doing the surgery to avoid further clotting issues and damaging my subclavian beyond repair.

Did you end up doing the surgery, and if so are you glad you made that decision?

Thanks so much!

I've got thrombosis in Nov 2013 and was diagonised with vTOS. Since then I am on blood thinners (first Warfarin and now Xalerto). I rarely have any symptoms.

I was deciding regarding the surgery myself. At the moment I am inclined to wait. That was also the suggestion from experienced TOS surgeon I believe. His rational is that even by doing the surgery there is no guarantee I wont reclot as the vein is damaged and even without mechanical pressure it can potentially reclot. The other thing is that I have developed a lot of collaterals which are helping the main (subclavian) vein. Even if I reclot I have a backup in these collaterals. By doing the surgery there is a risk of these fine veins being damages so I am back to only the main subclavian. He also predicts around 10% of reclotting if I take myself of blood thinners. At the moment (thank God) Xalerto has been great (no issues, very convenient drug) and I dont think I'll be doing the surgery anytime soon.

That's only my input.. :) Some people prefer the surgery which is potentially a long term solution. Great thing yours is probably only vTOS not nTOS so even if you do the surgery it should be quicker recovery.

Good luck!

Thanks for your reply Simurgh.

I think I am going to spend a little more time weighing the options. Right now, I am completely symptom free besides the multiple bruises from my Lovenox 2x daily injections. I am going to look into an oral option for blood thinner.

I'm also going to start working out again to see if my body will tolerate that.

Best of luck to you!

Sorry for being away for so long, but I thought I should give an update since I started this thread a while ago.
I have still not opted for surgery. I ended up seeing some doctors in Houston and had another doppler with them. They said the surgery was an option but if I could manage it conservatively that was better. I did not have a venogram.
Since then I have done some ART which helped in the beginning for a few months. I think it was good but it wasn't permanent for me.
I get massage sometimes. But I mostly started doing some stretching and work on posture especially while sitting.
I don't swim anymore and probably won't again unless I can figure something else out. I am averse to the surgery as I am able to carry on with pretty much everything - except for swimming and playing violin.
Also, I never went on blood thinners as the clot was caught too late to do that. I have collaterals and dopplers have shown that I have some blood flow just not as much as on the other side.
Good luck to everyone -