I now have to see another TOS dr in Philadelphia as my original surgeon doesn't feel comfortable enough to do my surgery .
I would have gone to this other guy first but....
ANYWAY in the meantime I need to know if anyone has venous congestion (swelling of the upper arm only between the shoulder and elbow) I know I have true neurogenic TOS (both vascular and neurological) and I'm not able to have surgery till at least spring. (personal reasons)
What I need to know is what you've done to relieve the pain and swelling? I'm at my wits end and not sure what else to do.
I've noticed when the swelling is bad the pain is worse and meds don't help.
thanks in advance.

I wonder if you can contact any of the top drs by email, or the one you will be going to, {does that one have your records already?}
and ask what they recommend for vascular TOS swelling?
I don't know if they would or could do that without seeing you or your records at least??

Your local dr or the other surgeon has no suggestions??

There's no expert/advanced PTs/chiropractors in your area to get an evaluation or suggestions from?
You should be able to ask for an evaluation & opinion only and no treatment at this time.
you'd probably have to take copies of your tests results and pertinent info

Do you think it is more blood flow {veins/arteries}or lymph flow {more all over} swelling?

I had this prior to my surgery but I had an 80% occlusion in my subclavian vein. I was swollen any time I walked or moved around. It was like my arm was not mine.

i rested put it up on pillows so that the congestion could slow down or ease a little.....MASSAGE was a huge help to get rid of the swelling and help to increase lymph drainage.

I hope you find something to help

Take care
love and hugs,
Victoria

That is a bummer to have to find someone else to do your surgery, but at least your surgeon was honest with you and didnt go ahead and do the surgery without feeling 100% comfortable doing it.

My surgeon instructed me, because of venous TOS, to use a compression sleave or a tight ace bandage wrapped around my arm after surgery (my swelling was completely all over one arm) to assist with the blood flow OUT of my arm, but my subclavian vein was 'dead' and not allowing any blood to flow through it. However, if I were you I would check with your Dr. to make sure something like that would help and not actually make anything worse.