Doesn't anyone who has TOS ever have distended neck veins on affected side? Especially venus TOS. My neck veins are constantly engorged regardless if my arms are up or down....like something is compressed all the time and probably why I have cardiomyopathy.

Yes I do! It's always puffed out whether my arm is up or not. And I can't lay on my back because it swells too much and it's too painful.

Have you been diagnosed with tos? I keep telling doctors that my veins in my neck hurt when pushed on especially when I bend over.

I suggest finding a TOS specialist since it seems so far drs are not up on looking into this..
TOS drs and PTs -
http://neurotalk.psychcentral.com/thread135.html

Yes, this is my next move. The issue is doctors have all lumped me in the crazy category but I know something is wrong. My shoulder and neck and sometimes my arm hurts so bad. My veins are engorged and I haven't felt right since it all started. I can't understand why doctors wouldn't think engorged veins on one side wouldn't suggest a problem downstream especially since they weren't like that before. BTW I was sent to a vascular surgeon in the beginning and all he did was an ultrasound of my neck and told me I didn't have any compression but I was on medicaid and I feel that I am being discriminated because if it.

Yes I have vascular and neurogenic. My primary compression is arterial. My subclavian artery and vein are both compressed. when I bend over and come up I get really dizzy and lightheaded. When I lay flat on back it swells up and it's hurts. I just met dr Donahue in Boston and he said that vein bulging out had nothing to do with my TOS. My PCD referred me to a cardiologist and I'm seeing Dr. Lum at JH next month. I will let you know what he says about it.

Yes please let me know what you find out. I had an appt. With my cardiologist's PA and he listened to my concerns and is sending me to an OMM (rib/spine manipulation ) My only concern with that is if they start moving things around and if there is a blood clot and it dislodged. I am going anyway, my left collarbone sticks up way more than the other side so maybe there is something to this.

Also I forgot to ask you, are your veins puffed out on one side or both?

a vein in mu upper chest sticks out when I do shrugs with weights

No it's only puffed on the side of my compression. My collar bone sand shoulder have also dropped on that side. If I can figure out how to post a picture I will.