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.

You are correct, many that had surgery and are doing well, do not often post on forums..
Pubmed had study yrs ago that approx 75% recovery nicely.
But if it doesn't go well..it can become a problem..

My opinion, if you are feeling quite well and mostly normal use and activities, I would wait- when and if pain or symptoms show up, then look more into surgery.

Imaging & surgical techniques usually improve, so later on better imaging /testing might clearly show exactly what is compressing things, if recent MRI /testing doesn't show clearly..

I've had a DVT for years now on my left side. never had symptoms on the right. I've developed many collaterals. I do experience fatigue in my left hand and arm if I over do it. I wear a light compression sleeve in my left arm during most any activity. It helps. I don't notice that my arm changes color any more and the sleeve resources the slight swelling I get when using it.

My doctor told me if the vein was clear, then he woukd recommend the surgery, since mine is still completely ocluded, then he just didn't believe my vein would ever stay open... Even with a vein bypass. My advice would be.... If I considered anything, I'd do the unaffected arm. Just have your rib removed to avoid the issue. I don't think you'd have a big problem from just removing the rib. There is a chance that the damage has been done regardless of the surgery. You good arm vein is probably scarred where it crosses the rib. Did the Dr. say your vein shows scaring in the good arm?

I took Eliquis for over a year and now all I take are two aspirin a day. I developed dizziness with long term use of Eliquis.

Thank you so much for the reply. Do you mind sharing the study so I can have a look?

I am going to see the second surgeon in 2 weeks and see if he changed his view. It was a year ago when I saw him the last time.

None of the surgeons would want to operate the side that didn't have a DVT before they operate the affected side.

I did MRI and venogram and it showed scaring only on a DVT side, although even affected side is fully patent when they did Doppler. I also have quite a few collaterals developed. 2nd surgeon said he would only operate the affected side and that there is a relatively small chance (15%) to develop DVT on the opposite side. 1st surgeon said it is up to me if I want to have the other side operated after I do the affected one.

I don't know how much damage DVT has caused, but I can't tell any difference between the arms. I rarely have any issues with either.

I am just scared that the surgery would cause the damage (not the one which is already there). I don't know if collapsed lungs, damaged nerves, partial paralysis, pains (all the things we hear on this forum all the time) are freak accidents or the integral part (side-effect) of the surgery regardless of the condition before the surgery. I have none of those right now, I won't want to risk it if it is a big risk.

Both surgeons tell me I can do the surgery and stop taking thinners or keep taking thinners without the surgery, although the 1st surgeon (less experienced) one recommends I do it. He says I should be fine in 2-3 weeks after the surgery.

Always seek the very best surgeons to best avoid the risks you mention..
Check them out , how many have they done, how much training..etc..



* PUBMED.com - keyword- TOS surgery or TOS spelled out.. should find it..
the link is in the useful stickys somewhere..

Hey bro,

You posted on my thread the other day I Spose were in a similiar position.

I'm 90% symptom free with arms but my side but any prolonged physical stuff and I'm gone.

I've been debating surgery aswell, as I've done 6 months trying to figure mine out conservatively every night, with minimal to no improvement.

I've researched into surgery same as you and it does seem a lot of people that have it never post on here again, so I'm assuming they were successes. I've also read that ATOS/VTOS surgeries are more successful than surgery for NTOS. Ive read some people (usually athletes) have made full recoveries super quick (with in like I month or two). That would be best case scenario as if I have it I would have to be back and fit within 2-3months. BUT same as you and others I'm scared of running the risk of having life long complications but I'm getting to the point now where I'm leaning towards surgery.

Best of luck in your decision but like everyone's told me do your research and find a good surgeon if you go ahead. Keep us posted.

dude if your not in pain and can still do the thing you love DONT get surgery whats the point....... save it for later

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.

Hey I’m also from Australia in similar situation and age group to you at the moment. Did you end up going with surgery? if so, how are you now? and if not, what have you done to resolve it/manage, since your job is so demanding like mine. Thanks!