Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 07-21-2016, 06:00 PM #1
sundance_15 sundance_15 is offline
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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.
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Simurgh (07-22-2016)
Old 07-22-2016, 05:07 AM #2
Simurgh Simurgh is offline
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Quote:
Originally Posted by sundance_15 View Post
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.
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.
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Old 07-22-2016, 11:23 AM #3
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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..
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Old 07-24-2016, 04:46 AM #4
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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.
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Old 09-10-2016, 03:14 PM #5
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dude if your not in pain and can still do the thing you love DONT get surgery whats the point....... save it for later
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Old 09-24-2016, 03:36 AM #6
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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.
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Old 11-30-2023, 03:14 AM #7
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Quote:
Originally Posted by bigkizza View Post
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.

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!
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