Hello there.
My name is Gil and I am from Israel.
My wife who is 33 years old was diagnosed with TOS 6 months ago.

To be honest we are currently a bit confused and the more we see the doctors the more questions we have...

My wife has almost complete blockage of the artery and some blockage of the vein (I assume you'd like to know the kind of TOS she has).
She has history of DVT with 3 occurrences of PE (first in 2001, third in 2005) and she is taking Coumadin (Warfarin Sodium) to keep her INR between 2 to 3.

The TOS is probably related to the fact that last year we hiked the INT (Israel national trail) - 1000Km long with loaded backpacks.
A bit after we got back my wife swam across the sea of gallile (4.2Km swim) in the annually national crossing...
A month later she stared having pains and had no pulse in her left arm.

The 1st doctor said that she has completely artery blockage and since she is still young she should wait for collaterals to appear so she would get most of the blood flow back without any surgery.
The 2nd doctor (works under the 1st one) suggested to start physical therapy and blurbed something about taking a 2nd opinion (probably didn't want to overrule his superior...). He also said that they don't perform ribs removal surgery in their hospital.
My wife had Doppler tests before seeing each of the doctors and a CT Angio before meeting the head of the department (the first doctor).

The 3rd doctor to whom we went privately saw her CTA results and checked her using a Doppler equipment as well (in person, he did the tests himself), he said the she still has flow in her artery (high pressure & low volume due to the blockage) and since "we don't walk on our hands" the likelihood of developing collaterals is remote and that his recommendation would be to do the surgery.

I would really like to hear from people who had a similar problem on how you coped with it and if you did go for the surgery - what can you tell us about it? (From a patient perspective).

My wife had 3 activities she loved doing: Kitting, Swimming and thru-hiking. She can't do any of them now and it kills me to see her so disappointed and upset.

I was wondering if there is anyone here who suffers(ed) from TOS that used to do similar activities (especially swimming and thru-hiking) and let us know how he/she coped with the problem, did a surgery help? (The last doctor said she won't be able to swim/put any load on her shoulders after a surgery as well...)

Thanks in advance and please let me know if you require any more information.