Hi to you all, good people

I am at the point where I need to make a decision for or against the bilateral surgery(s) for venous TOS.

Here is my story.

I never had any problems with my arms, shoulders or neck - no pain, no discomfort, nothing. Last year I was exercising more than normal - particularly I was running quite frequently - pretty much every day for 1h.

After a few months of running I start to experience some shoulder pain but nothing serious. Then all of the sudden one night I woke up with swollen arm and went to A&E. I was diagnosed with subclavian vein DVT. I was put on warfarin (heparin for a few days) and sent home.

For a next few months I did a bunch of blood test and they all came normal. In the meantime my arm gone back to normal - both in appearance and colour and I don't have any pain or discomfort.

Finally I did MRI scan of my neck and shoulder area. On scan report, they said they can see significant vein narrowing in stress position (arms up). No cervical rib, no fibrous band. Arteries are fine, no compression. A few more months have passed and I finally saw a vascular surgeon.

He told me that according to MRI scan I have a significant compression of veins on both sides between first rib and clavicle. He offered me a surgery. The main reason for surgery is the fact I got DVT and they can see narrowing on both sides (although, radiologist wasn't sure if the narrowing is significant enough to cause toracic outlet syndrome). He said they would remove the part of the first rib and muscle to decompress the passage. Although he recommends the surgery, he said the decision is on me. Surgery in itself brings some risks.

I am still taking anti-coagulant (not warfarin, but xalerto). Much more convenient than warfarin.

I have no idea how to make my decision. I definitely don't want to be restricted all my life for not doing any physical activity although I can live without weight lifting. I am 27 healthy male.

I ask them how many surgeries of this type they do and he said they do up to 10 per year as it is quite uncommon problem (I live in London, UK). Is that enough?

Can anyone please give me any advise on this? At the moment I have zero issues - no pain, no discomfort, nothing. I don't mind taking anti-coagulants as I have no restriction in diet and I don't need to be tested. But I don't want to risk to get another clot which might cause much more problems.

Sorry for making it a long story. I suppose I am a bit lost. I wish you all the best to all of you and many thanks in advance.

Well, it sounds like the extra running might have triggered the clot, so you may have intermittent compressions, more than a constant one. Maybe due to the arm positions during running..

You could work on posture and keeping the chest/shoulders area open for more blood flow.

Since you are on the blood thinner your risk for another clot is lower.

Quite a few with this scenario do decide to wait and see how they do, then surgery is always the option later on if needed.

If you can get some expert PT or expert chiropractic sessions to make sure you get a good start on any posture & body mechanics, and make sure there are no misalignments...

You can search here for VTOS and other posts about it.

Dear Jo*mar,

Many thanks for your advice. In my MRI report it says:

"On the coronal images, there is no evidence of a cervical rib. I can see no evidence of fibrous band. The costoclavicular space however on both sides does seem rather narrow. Comparing sagittal images in the arms up and arms down position, there are changes of thrombus within the right subclavian vein. In the stress, arms up position there is significant narrowing of the subclavian vein as it passes through the costoclavicular space. This seems to be the case bilaterally. I think however there is a very thin fat plane around this. I am unsure as to wether this is a simply marked physiological change of if it is significant enough to cause track outlet symptoms. There is, however no evidence of compression of the artery and with contrast both subclavian arteries passing to axillary arteries are normal in appearance. No other significant findings."

I don'w know if somebody has experience and what can I make out of this.
My main concern is that I would go from zero issues to having pains and discomfort due to surgery(s) all my life. But the prospect of having another clot or staying on xalerto for life (and risking bleeding) is not appealing either.

Is it true that VTOS surgeries are more successful in terms of post-op pain? (does it make a difference)?

Does anyone know any good place in UK where can I get another opinion? Should I avoid any(all) physical activities in the meantime (running, swimming, etc...)

Thanks a million!

Simurgh, like Jo*mar said you have to work on your posture. Sounds like you may have a VTOS and it is a mechanical problem. I will suggest you to go take a look on my post about Re education posture global.I will think you have similar symptom than taybm20 with little differant way to get it. Go take a look on her or his post. I believe the R-P-G is the best way to go but i think a good PT or chiropractor who have good skills with TOS will be able to help you.

Alexis

Dear Alexis,

Many thanks for your reply. This is a great help for me.

I don't actually have any symptoms apart from DVT that I had almost a year ago. I don't have any pain or discomfort. My vein is fully opened. Regardless the vascular surgeon I saw suggest I do the surgery and remove the first rib on both sides.

Can you please explain (or refer me) what R-P-G is?

Even if I do something apart from surgery I don't know does it do anything as I don't have any pain, so I don't know if there is any improvement...

I am stuck on decision whether to go with 2 surgeries or not as I don't have any problems.

RPG is Re education posture global. At the begining my symptoms where verry little and i had no pain but my arms where getting tired really fast when i was working with my arms above my shoulders. If i was holding my phone to talk my shoulder was getting tired pretty quick to but i had no pain. Do you feel something similar sometime? I did write a post about RPG, it's not good only for TOS but for everyone even for peapole who dosen`t have problem.

Alexis