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.

In the case of arterial TOS it is largely agreed that surgery is pretty much the only option. From what I hear of your wife's condition- it sounds like she really needs surgery and soon for her quality of life and well-being. But I am not a doctor.

Anyway, I had arterial TOS and also couldn't do all the things you listed. It was terrible. I had both first ribs removed about 3 months ago and I saw an improvement immediately though not all of my symptoms are gone and recovery can be a bit rough. If I could reverse time though, I would absolutely get the surgery again.

No matter what, though, your wife will probably not be able to carry heavy loaded backpacks. There will always be some amount of restriction because you don't want scar tissue to grow in the area and cause TOS all over again. She will need to know her limitations and adjust to them. It will be better than where she's at now though.

I wish her the best of luck!!

It wouldn't hurt to seek out the very best physical therapists, body workers or possibly a multi skilled chiropractor.
Maybe a combination of any or all.
It does take time either way, surgery takes time to recover from fully.

[history of DVT with 3 occurrences of PE (first in 2001, third in 2005) and she is taking Coumadin (Warfarin Sodium)]

For the above, was there actual blockages (plaque etc) inside of the arteries/veins, or are they thinking it was due to an structural/physical compression (rib or scalene etc)?

Definitely don't go with that surgeon. My surgeon's goal was to return me to full activity. While I am having more surgery to clean up the area above the clavicle (my first surgeries were through the armpit), I have been able to swim without any problems from about 3 months after the original surgeries. I can still swim today even though I am having surgery next week. I feel my best when I am in the water...less stress on the body due to buoyancy I am guessing.

Hiking post surgery has been no problem for me, but thru-hiking might be pushing it. I can wear a lightweight backpack, not a heavy one.

I am not saying this will be the case with your wife but it is possible.

My first recommendation is to find a therapist who can mobilize the ribs and scalenes to try and open the costoclavicular space and try to avoid surgery. Also, you need to shop around and find the right surgeon, even travelling away from home for surgery if needed.

I think that in her case, with her vascular risks, the rib needs to come out and probably some of the scaliness cut ASAP. Risk of more PE and stroke are too high. Everyone with these issues should read up on parson turner syndrome.

I'm over five years into neurovascular TOS and I also have a paralyzed long thoracic nerve. I agree that being in water (warm!) feels good. Overhead strokes might not be possible for her if compression continues.

Every case is different, which is the bane of the diagnosis. Definitely get more than one opinion. It took me quite a while to get the right diagnosis and believe my, I tried every possible type of conservative treatment. I was in AGONY. Finally last year Dr. Richard Braun in San Diego took my first rib (supraclavicular incision), and suddenly I had blood flow back and my hand swelling went down! What a huge relief! I still have problems with the nerve pain, and shoulder issues, but at least my arm isn't having a non-stop arm-'heart'-attack! I wish it had been approved 5 years ago. Maybe my life wouldn't have gone to ....

I travelled to other states on my own dime, and even to another country, seeking private treatment options. I need more surgery, and I wish it had happened sooner, but I trusted him. A lot of people don't understand this syndrome. There is no "perfect" way to diagnose it, and tests can be completely normal to appearance. And WC with fight you every step of the way.

Best of luck to both of you.

Thanks All.
Sorry for not replying sooner.

My wife started seeing a physical therapist. We hope that it might help a bit until we get clearer answers about the operation, will it be covered by the insurance if we take it abroad, etc...

Jo*mar: As far as we were told it has nothing to do with TOS and as far as we know there was no blockage at the time. the TOS symptoms (weak blood flow in the left arm) appeared just a few months ago.

nospam: Thanks for the info, a light backpack would be good as well, if she could carry just a few KG (most of them on her hips anyway) it would make us able to hike again as I could carry the rest for her. But to be honest - she is in so much pain and discomfort I no longer think about hiking, just to get her healthy again.

Shalom GIl I hope your wife is feeling okay and that your Passover was good. Hope she feels yofi soon

Thank you

Welcome to NT

You are not alone in your confusion. It's just a very real part of this diagnosis.

For me, I did not find a good doc for four years. Rear ended by an ambulance while stopped at a red light in 2000.

Ive tried the gambit of many things. 7 1/2 years of PT. many injections. Lots of meds. Keniso taping.

LED/infra red light therapy pads helped me a lot. Would share more info if you want to know.

Now, I'm functional. Very little problems. I was rear ended again, stopped at a red light. Hit and run, Dec 2011. Had some problems again but getting that under control...

It's been hard. I feel so sorry for anyone diagnosed with TOS and related conditions. So individualized... Yet so familiar...

Know that it will take time to get over no matter what you decide to do, and if that is helpful. Lots of trial and error.

Definitely stop doing things that irritate the symptoms. Easier said than done, but I know, by experience, I caused myself a lot of pain by not complying with my body's signals.

Word to the wise... Listen to your body.

Only let TOS EXPERIENCED HEALERS HELP...

Knowledge is empowering.

Palms up... That was a relief when someone here enlightened me about that technique.

While laying on my back, it helped to turn my palms up....

Sometimes it's the little things that get you through the moment.

Praying for you both...

Thank you very much for your reply.
Currently the TOS on the right arm that blocks the blood flow when my wife raises her arm doesn't bother her too much, she tries to avoid that but only because she was told it's not good for her, she doesn't feel any discomfort with that.
The TOS on the left arm is quite different. It affects her daily life completely as there is always almost no blood flow there. There is not much to avoid in order to irritate the area as any kind of activity with the left arm causes pain almost immediately...

I would love to hear more about the IR therapy you mentioned.

Thanks again for your kind words.