I had the top of the arm on fire thing after each surgery, the first went after a while, this time I'm 9 days on, the fire is there. It is awful but it does pass. Not sure what caused it, I figured it was some nerve hyper sensitivity.
The numbness should decrease after 12 months or so according to my cons. Not back to normal as that nerve has been cut, but you will get some feeling back. A numb armpit is better than more chronic nerve pain.
The journey is a rough one, for some more than others. I've had a pretty hard time of it.
Hang on in there

5 months post op now and the front of my shoulder feels quite numb still. Its a strange sensation when I scratch it as I can't actually feel it too much but at the same time my skin very close to the region is over sensitive and the slightest touch feels like it's being rubbed with wire wool. I've kind of gotten used to it however and the intensity has settled down. I'm sure yours will settle too aftertime, try to relax and gently massage the area with oil to soothe.

Nicole, these sx can take a while to resolve, different for everybody. My burning armpits took about 4-5 years to resolve - and sometimes they act up again. Ice is my very good friend! I know you are tired of dealing with all this, but keep telling yourself that the worst is over and it will get easier as time goes by.

Be sure not to lose your range of motion - do easy stretching of the upper thoracic, shoulder, arm and neck. Easy does it!

Anne

I notice there is a few of you who have ATOS or VTOS. I am pretty sure I have true ATOS OR VTOS without neurological part. There are no good doctors in NEW YORK and I cannot see Dr. Donohue in Boston until6 months when my insurance kicks it. Does anyone know if I am a severe risk within 6 months of aneurysm or blood clot?

My symptoms are only bulging veins on right hand only and throbbing. I also get right sided head aches and neck pain. THe pain on a scale 1-10 is not high its a 3 or 4. The only reason I am going forward with this is because I know even though it doesnt disturb my life right now, that one day it will and its dangerous.

I need advice with someone who has gotten diagnosed with this and what their doctor told them.. I went to one vascular surgeon in ny and he didnt know much about thoracic outlet syndrome. He did a doppler on both arms and only put my arms in 2 positions. He said that there is compression and as of now he doesnt see and aneurysms or clots.

Now I could have damage to an artery still, correct? The doppler wouldnt pick up damage to the artery or vein wall would it?

Also, how painful is the venogram and arterogram? I keep hearing bad things about surgery, however, doesnt the patient have no choice in the matter?

If ATOS or VTOS can kill them then they have to get the surgery, no? But the surgery can do worse damage if the surgeon doesnt know what hes doing??

So basically what I am saying is..the surgery is a 100% cure ONLY IF they remove the EXACT PRECISE reason the artery is being compressed int eh first place. If they pick the wrong anatomical structure then the surgery was a failed attempt and the patient is worse off...

I apologize for ranting and raving. You all here are the only people that understand what I am going through. I cannot talk to my family or friends about this because they do know what it feels like to constantly worry if my arm is going to throw a blood clot to my brain.

I am suffering from constant worry from this and I have no hope. Is there anyone out there that can put things into perspective for me? Anyone who can share what their doctor has told them? Thank you everyone who reads this and offers advice. I appreciate it more than you know= )

Disclaimer 1: I am not a doctor.

Disclaimer 2: Symptoms and risks vary between patients.

Read the following paper:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2728415/

IIRC only a 1 or 2 people needed their blood vessel repaired.

Also, if your symptoms get markedly worse, like the whole arm swells and changes colors (VTOS), then you must go to the emergency room (ER). Same if you get anything else like chest pains or faintness (ATOS).

You might also play around with various kinds of arm support to take weight off the shoulder girdle or even move the collar bone away from the first rib to open up the space. I'm not promising it will help, but for some it does.

You can also try not sleeping on your symptomatic side in the event that you are doing so. I would think that would only add to the compression.

I understand from your message that you would like more certain answers to your questions. Unfortunately, with few people understanding TOS and apparently no perfect diagnostic tools there is not much certainty to be had.

HTH

Chroma, have you had a first rib removed? I haven't read all your posts but wondered if you have had surgery for TOS. You seem very articulate!

I have not had the first rib removed, but have not ruled out doing so. One of the biggest deterrents for me is that some people come out worse and for a surgery that is expensive both in terms of cost and post-op down time, that is completely lame!

Back in July of 2011 I knew nothing about thoracic outlet syndrome. When I was first diagnosed, I said "Spell that."

Much of what I've learned has come from this forum and the web sites people have pointed to. I also question my PT and chiro and combined with various books I've read, try to make sense out of all of the bits of information. I try to connect the dots because none of these health practitioners are with you day in and day out.

Thanks for your reply. I thought I saw a post of yours on the post-op thread and was trying to figure out if you were doing pt after an unsuccessful surgery. I'm hoping to be a success story myself. After many years of chronic pain, I feel like I have nothing to lose.

That's an understandable decision and there are success stories out there, so it's definitely possible:

wihtedianthus: http://neurotalk.psychcentral.com/post844930-88.html / http://neurotalk.psychcentral.com/post844933-1.html

josepentia: http://neurotalk.psychcentral.com/post827948-13.html

184jones: http://neurotalk.psychcentral.com/post847129-20.html

Good luck and stay in touch!

Thank you, Chroma! I'm still wandering through this site reading bits and pieces. You made it a lot easier for me.