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Old 07-20-2016, 09:26 AM
Simurgh Simurgh is offline
Junior Member
 
Join Date: Sep 2014
Posts: 31
10 yr Member
Simurgh Simurgh is offline
Junior Member
 
Join Date: Sep 2014
Posts: 31
10 yr Member
Default Would you do the surgery if you were in my shoes?! vTOS

Ok.. I've been reading this forum and a few other forums for the last 3 years.
This is going to be a long-ish post, but I would REALLY appreciate your comments here, good people

I wrote my story here before, but I will summarise.

- I got DVT in my subclavian vein 3 years ago.
- I have been put on anticoagulants and didn't stop taking them since.
- I did both MRI and venogram and I was diagnosed with vTOS on both sides.
- My veins are patent since DVT and I also developed many collaterals around my subclavian vein.
- I am almost symptoms-free - I rarely have any discomfort or pain in my shoulders or arms; my arms are somehow more coloured especially after the exercises like push ups or similar. I do run quite often (4-5 times per week) and don't have much problems with that.

I've seen two surgeons. The first surgeon (who was the first who saw me) suggests the surgery, arguing that it is necessary in my case. He himself did up to 20 surgeries of this type (rib resection) and is of opinion there is only around 5% chance of complications (like neurological problem developing after the surgery) or other complications. He also thinks that the surgery would almost certainly solve the compression problem. He prefers transaxillary approach.

The second surgeon I saw is a bit more experienced in dealing with the paget schroetter syndrome (vTOS + DVT). He did around 100 surgeries before. He thinks I should not rush, as there is a chance that the surgery won't solve the problem. He prefers supraclavicular approach. He is somehow 50:50 should I do the surgery now.

I've been arguing with myself for the last year or two what to do...
On one side, I have almost no day-to-day problems. I am taking Xalerto (blood thinner), which is very convenient and much better than Warfarin and I am not really restricted in any way to do most things I want.

On the other side, I don't want to risk damaging my vein further, developing nTOS or having more problems. I would also like to stop taking thinners so I am not under the risk of bleeding or similar. (although my haematologist says me bleeding is very unlikely unless I physically injury myself).

The surgery in my mind is a big unknown and I don't know how to approach it.
I need to evaluate the risks and the benefits of the surgery alone.

Reading the forums I can't get the right impression what does the surgery brings (I know this varies a LOT, but I need to have some idea about the odds). How many people get serious post-surgery problems (not the one they had before the surgery)?!

How likely is that the surgery damages the nerve that was ok before the surgery? How likely would this lead to disability in the arm (I read here that one guy got paralysed arm after the surgery)? How likely is that the nerves that control my lungs would get damaged - I don't want to end up with the 80% functions lungs, I do run a lot and that would make it very hard. How likely is that the scar tissue would make me worse after the surgery - start having pains I don't have now? How likely is that taking my rib would solve the compression problem?

How big these risks really are? I know nobody really knows, but are we taking about 1%, 5%, 50%...

It seems to me that large number of people are having some complication because of the surgery (not the condition).
Maybe that's the negative bias (people who went well through the surgery won't really read these forums)...

I suppose my question is... How likely is it that I stay symptoms-free (same as I am NOW), but I solve the problem of the compression with the surgery??

Please do share your opinions freely. I know we are not doctors here, but I would very very very much appreciate any opinion on this subject.

Would you do the surgery if you were in my shoes?!

Btw I am 29 old male living in the UK.
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