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


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Old 07-06-2015, 02:14 PM #7
Simurgh Simurgh is offline
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Join Date: Sep 2014
Posts: 31
8 yr Member
Simurgh Simurgh is offline
Junior Member
 
Join Date: Sep 2014
Posts: 31
8 yr Member
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I had subclavian DVT in November 2013. Since then I am on blood thinners (first Warfarin, now Xalerto).

I did MRI and Venogram and I got diagnosed with VTOS. Significant compression when I rise my hands - on both sides. Blood flow almost stops.
Now I am still balancing my options.
My vein is damaged, but it is patent (about 50%). I have a lot of developed collaterals around the vein. I don't have any pain. My arm is totally fine 95% of time. Only time when I have problem is if I try to do weigh exercise. I run, walk, type and have zero problems with that. Affected arm does look from time to time more coloured.

My surgeon thinks there is no issue with waiting as long as I am on blood thinners. Since I switched to Xalerto it is so convenient - take a pill once per day and that's it. I cut my self a few times, no issues. Press and it was fine. Surgeon actually told me it might be even beneficial sometimes to wait after DVT as collaterals might further develop.

So it is a hard one for me. I practically have zero issues (no pain or discomfort), xalerto is so convenient (I can eat what i want, no testing, no other issues thanks God..)... still surgeon thinks I have 3 options:

1. stay on blood thinners, without surgery
2. stop taking blood thinner, without surgery and see what happens
3. do the surgery

All 3 options do have risks. I might decide in next few months. Although it has been almost 2 years of this journey I am still not decided what to do, neither are my surgeon or my haematologist.
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