Hello fellow tosers

just to introduce myself

I have survived 10 years with TOS. My goodness what a scary bumpy road my journey has been. I went back to work after my bilateral first rib resection with cervical ribectomy, I had cervical rib on right side and some kind of weird ligament band thing on the left that had me in a headlock. Seriously OMG. SERIOUS PAIN.

I was a wallpaper hanger and I put myself through college for degree of registered nurse. Well wallpaper hanger was not such a good idea I did not know at that time that I had a birth defect, or I would certainly have found another job to do. Tosers can not work in arms overhead work!

Anyway, that's what happened to me. I was just hurt in a major way. I got lucky and found a osteopath that spent one year working on my ribs, (what I had left) I had total of 3 ribs removed and one ligament detachment lol. This doctor gave me my life back. I got better and went back to work. I was just elated. I worked very hard at rehabilitation and it worked. Only thing was pain control. I always had severe pain after my surgeries. I am pretty sure I had bracial plexus injuries from TOS surgeries. I had to have pain medication to be able to move.

I survived the last ten years due to pain management with medications. I worked up until Feb. 2013. My pain was managed well up until Feb. of this year. The DEA has scared every pain management physician and I end up the collateral damage......My pain management doctor stopped medication management and I was given only one month to find another doctor. He did say sorry. I found another doctor and he walked in room and said, you don't have that much pain, and you probably didn't need the surgery you had

Needless to say I did not return to this evil doctor. I deserved better. So I had to find another doctor, send referral, wait for response and finally made appointment for may 16th. This doctor has good reviews and I sure hope it is true.

I think I have one of the pain syndromes due to brachial plexus entrapment by scar tissue. With no pain control I am sooooo miserable. My arms are jerking, I can feel my brachial plexus firing off for no reason. I can feel sounds in my chest and it hurts really bad. I can't do anything because any movement means horrible flair. OMG. I thought I had already been through enough. I am so miserable and exhausted from severe pain. I have been bedbound for almost 4 months now.

Sorry this is so long, I just need to tell my story to someone who understands.

I was wondering if anyone here has a pain syndrome following TOS surgery, it is called "sympathetic maintained pain syndrome"????? another pain syndrome is called "complex regional pain syndrome".

I believe many of us have pain syndromes because the transaxillary surgery causes brachial plexus injuries.

I also go to see a brachial plexus specialist on 22nd of may. At this appointment I hope to get CORRECT diagnosis for what is wrong with my back.

I have one more question if any kind toser would be so kind to help me. I will help others here too as I have many years with TOS under my belt.

OK question is: has anyone else had problems with severe pain and treated badly at a doctor appointment, or is anyone else having problems with medication management in this new DEA infested system?????

When I move or use my arms the brachial plexus go crazy, spasm...flair. Just complete mayhem!!!!! I have to have medication management or I just suffer like I have the last 4 months. I am sooo very tired and having apathy feelings. I am trying to be positive but ...... I am just so angry I could spit nails.

OK rant is done and now I have to try to be positive , more positive thoughts. It is so hard to think positive. I feel like giving up, I am so tired. But you know what!!!! I helped many many people during the 10 years I was nursing. I was a home health nurse. I loved helping the people, I just want to go back to work. oh almost forgot, I saved some lives!!! they would have died if I had not been there. I know that my courage to work through my pain had a impact on many lives and I am very proud of myself. I never missed one day of work, ever.....sometimes I even took patients because another nurse called in sick....I did have to work sick some days, hurting and stuff, but I did it!!!

Thinking positive that if I can get correct diagnosis of pain syndrome I can get the medicine I need so I can return to my life and my career!

Wish me luck, I will pray for us and I will try to stay strong.

Thank you in advance if anyone answers my questions.Hello fellow tosers