[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?

[LiveLoveandTrust]

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?

I had ANVTOS bilaterally with no clot. I opted to have surgery as the complications from clots are downright terrifying to me personally- moreso than facing a nasty surgery. It is ultimately up to you and your doctor what you decide to do for your situation but most doctors recommend surgery with vascular TOS because of the potential complications that come from it.

[Jomar]

It really depends on you and your symptoms.

I know some in the past had compression 100% of the time even with arms down.
That usually indicates a more constant compression, also mentioned was severe swelling & constant heaviness of arms.


Does PT work on overall posture?
Does PT seem to have advanced skills & knowledge of TOS?
do you have the head forward of the body and/or shoulders forward or hunched? very typical for long time desk workers.
If so, working on opening the chest and dropping the shoulders back/down might give the extra space back to a more normal.

What kind of stretches are they having you do?
Has your alignment been evaluated - perhaps by a expert chiropractor?
Especially if you have been in any accidents or sports injury with hits or falls to upper body.

Did testing/imaging show what was causing the occlusion?
Any bony anomalies?

[Shoestringlover]

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?

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.