My TOS arm/hand is much warmer than the other one
 

Does anyone else ever have this? It is weird. My hand is so much hotter with this flare. My husband was shocked when he felt it. He found it hard to believe until he felt the two hands. My arm burns so bad internally and shows the heat on the skin. Has anyone else had this happen?

I had this happen on the side that was primarily neurogenic TOS. The skin became quite red and hot along the ulnar nerve path. Since surgery, I don't have this happen. The current side (arterial and neurogenic TOS) becomes extremely cold.

That can be a symptom of a venous problem, including a clot. If it doesn't go away I would get it checked out.

I will call my doctor tomorrow and let them know what is going on. The warmth thing is new the past few weeks. Prior to this, my hand was always cold. I never thought of a vein problem. Thanks for the heads up.

Any update on the warmth?

Is the skin super sensitive to touch or fabrics?
If so might be RSD /CRPS.

I think if a clot will become more and more painful and red in the location of the clot, vs whole hand /arm.
But everyone is different, too.

Nerves can affect things so many ways.

Might be good to make notes on what changes, worsens and improves things.

Update
 

Just got back home from my appointment with the hand-shoulder surgeon. He checked my ulnar nerve, checked for carpal tunnel and frozen shoulder. He did not evoke pain when testing for these things, but holding my arm up over my head made my hand ache so badly and turn white. He said it is not his area but it sure looked like TOS to him. He compared the temperature of my hands by holding both at the same time and said the TOS side feels a little warmer, but felt it was due to nerve irritation, not a blood clot because like you said, it would be getting much worse and would be swollen.

He did not rule out RSD/CRPS because I got it after my ulnar nerve surgery on the left side a few years ago. He said I need to go back to the vascular surgeon because this is beyond his scope of practice.

At least I have cleared up my doubts as to whether I had a blood clot (for now) and also was it maybe a severe case of carpal tunnel. I am concerned that is may be RSD. When I saw the vascular surgeon about three weeks ago, he wanted me to get a stellate ganglion block on that side to see if all this pain is sympathetically maintained or not. I don't know about those blocks, I have heard some good and some bad. Can it be sympathetically maintained if I can get out of pain in a couple of positions? When I had RSD on the left side, nothing I could do got me out of pain. This feels somewhat the same, yet also different.

I am so nervous and worn out. Not sure what to do next. Who to call? What would you do?

I know RSD has flare ups also, but I think there is alwas a baseline pain level.
Might be a good question to ask the folks on our RSD forum, if pain can go away at times due to positioning...?

TOS post-op
 

mine is the opposite...my right arm ..where i have the TOS is always much colder.....even after the surgery. I can't say that given the option to do this again I would ever do it again...I am 4 weeks post op...a lymph node was cut..the pain is excessive...my right clavacle area is swollen and above it is as hard as a rock...I am sick to my stomach all the time...everything burns ..all the way to every finger tip...these symptoms are much worse then pre-op...I feel as though someone beat me and left me for dead.

For a long time, my TOS hand would be cold and white. After months of PT and chiro, I shifted to a dark red hand with extra swollen veins. However, I can fix this by shoving my first rib down. The redness dissipates in 2 mins.

Also, I must never sleep on my TOS side or things get much worse and harder to fix.

I agree, no sleeping on my bad TOS side ever. I also can not seem to manage wearing a bra or any other clothing (camis) that put even the lightest of pressure on my shoulder area. I have found any pressure in that area makes my arm and hand get much warmer really quick. I think being larger breasted is making the problem worse but I am not sure. I have not been able to wear a bra in 18 months and I hate it.