u/embody-strikhedonia

I booked my surgery for a couple months away.
I’m scared as this will be the biggest surgery I’ve had to date - I’ve had two bursitis decompression surgeries in the last two years on the same shoulder that is affected by TOS.
I want to know everything, what was your experience, what helped, what didn’t, what did you do post op, how long was the severe pain, how long until you felt you had reached the “other side” of this thing.
I’m exhausted and very much over this ruling my life, but I’m scared for this surgery and what’s to come. I think that facing the possibilities might be easier to mentally prepare myself.
Thank you in advance!

I know every experience will be different but I am hoping I’ll find some advice or inspiration to help with sleep.

I was a side sleeper pre TOS and rarely if ever slept on my back, now I can ONLY sleep on my back kind of pain free. I still get scapular pain, neck pain with bad pillows and my arm is super tender from nerve pain. When my pain is low I can tolerate sleeping on my side, but only the side that the TOS affects, as trying to sleep on the “good” side means I my “bad” side is unstable and hurts more.

Has anyone found any weird ways of getting comfortable? A long shot I know but I am getting to points of desperation. Also, I have tried various sleeping aids / routines. Nothing helps on bad pain days and sleeping medication isn’t sustainable long term!

TIA

Hi, I got diagnosed last year with TOS after a long history of severe right arm and shoulder pain.
It all started in my neck only on my right side, I couldn’t turn my neck either way, using my arm was uncomfortable at first then it became painful to pull towards myself or up/ down.
The diagnosis was found because whenever my arm was raised past a point I lost most blood flow and it was an obvious colour change and my pulse became very weak in my right arm, not to mention the numbness and loss of strength in my hand.

I saw a thoracic specialist and was told that my pain symptoms in my neck and trap doesn’t align with a TOS problem so it is most likely something else. They also then did a test of my pulse strength with my arm raised, the first time it very weak to almost no pulse, second time my arm was raised only 30 seconds later my pulse was stronger and he said yeah it’s not a bad case of TOS. I don’t disagree as the research I’ve done on it I can see I do have a mild case, but I feel that the pain in my neck and trap is so much that I’m unable to function properly. I don’t know what to do because I thought this pain was from TOS, am I wrong here??