Originally Posted by cheryl1593

Hello fellow tosers,

I am 10 year TOS survivor, bilateral cervical ribs/bilateral first rib resections.

I just have a quick question, I tried to find some threads concerning chronic pain, I did read many here still have pain after surgeries. My new pain management doctor is questioning why I have so much pain and wants documentation of where my pain is originating from. I told him about my surgeries and he still wants documentation of where pain originates. So I went to neurologist and had EMG which was normal (that hurt and caused a flair up), then I went to a brachial plexus specialist who said my brachial plexus was functioning correctly and he didn't think my pain was coming from there.

I believe my pain is from EVERYWHERE, shoulders, neck. I have had pain since before my surgeries. The only difference is that the HORRIBLE nerve pain from nerve trapped by cervical rib is gone. I understand that the nerve is not trapped anymore which would explain a normal EMG.

Where the surgeries were done and my shoulders still hurt at about a level 6 on scale 1-10. It does bounce around due to weather or stress. I have not ever been pain free. Seems to me that TOS is a syndrome that creates pain and does not ever resolve.....that it just needs to be managed, like I have done the last 10 years.

I think due to the problems with crooked pain management issues the pain doctors now want definitive diagnosis for any pain syndrome they treat....like an exact diagnosis.

I do not know what to do or where else to go. I don't have active TOS as I had the surgery already, I just don't know how to get my current condition diagnosed for my pain management doctor.

If anyone here has any ideas they would greatly be appreciated, I am just so confused. It seems I could figure this out as I am a nurse. I just don't know what to do next. Maybe a TOS doctor?? or would one see me if I don't have cervical ribs anymore.

Also do most TOS patients have chronic pain? and are we considered TOS patients if we don't have TOS anymore following surgery.....if we are not TOS patients anymore what are we? Aliens?

any help would be so much appreciated, thank you in advance.