Quote:
Originally Posted by dlem
Has anyone ever been diagnosed with vascular TOS, no clot and been able to forego surgery? I've been diagnosed with mostly venous tos with near complete occlusion when arm lifted of vein and some arterial compression without a clot. Trying to go to JH in Batimore.
I have a very demanding job which will not allow for rest of arm. My arm gets ice cold and sometimes cyanotic when I am working at the computer. Ive been doing pt for about 6 wks, had to stop some of the stretches as arm was getting cyanotic. No change with massage or tens unit.
Anyone with any thoughts?
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I have vascular TOS, similar symptoms to you, numbness but also intense pain. I had surgery on my left side in May 2012 and the improvement was amazing. I felt like a new person. I am getting the surgery on the right side next week.
I spent a lot of time on this forum, and doing other research. None of my scans showed a problem, I even had doctors tell me that I did not have TOS and surgery would not help. These setbacks caused me to delay having surgery because I honestly did not think it would work, but in the end I was desperate. After the surgery, I regretted waiting at all and putting myself through that additional pain mentally and physically. The surgeon confirmed I had vascular TOS with 'severe' compression and no clots.
I know the surgery seems horrific, but honestly I had arthroscopic shoulder surgery and it was so much worse. I was up and driving in a week and back to work after three weeks.
My left side is definitely not problem free, but I am so grateful for the improvement the surgery had. I think it is important to put that out there after hearing so many stories of people who had surgery and did not improve.
If you feel you are not improving or getting worse I would encourage you to go with your gut and get surgery. It seems those of us with vascular TOS have much better luck.