10 year TOS survivor needs help
 

Hello fellow tosers :grouphug:

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 :eek: 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 :eek:

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 :grouphug:

Cheryl,

I have been bed bound and completely dependent on narcotics and Valium. As you can see from my signature, I have been through multiple surgeries. Scar tissue can wreck havoc on the Brachial Plexus, it doesn't mean there was nerve damage during surgery.

I did not want to go on living a drug dependent life so I opted for resurgery to clear the scar tissue. I am glad I did as the procedure was a walk in the park compared to the rib resection.

Don't give up, keep fighting. Explore all of your options, not just drugs.

Here in the OC if you need to talk
Cyndy

Cyndy, sorry but I don't know what "here in the oc" means. can you clarify that so I know what you are talking about. sorry am new here. thanks cheryl


I had a great life in spite of being disabled with TOS. I still had pain but my medications allowed me to work and participate in my life instead of sitting on the sideline in sadness. I have no problem being dependent on a medication that completely changes my life. It is not my fault that people misuse opiates. Those same people will just find a different source for their high.....off the streets. That is what addicts do. dependent and addiction is two completely different things.

Am really hurting so sorry if I am not making sense here. No pain management since feb.

I think that was directed towards me. OC = Orange County, CA

Over the past 3 years hydrocodone and Valium have allowed me to work. I had surgery each time I became unable to work even with medication. The problem is I built up a tolerance to hydrocodone where it stopped working altogether. Now I'm on Percocet (oxcodone) but I have to more careful in taking it (I'm trying to stop it altogether). I'm not going to go back to work if I have to take Percocet to function at work. I'm willing to take Valium to be able work but not both.

I did great at work with my pain medicine on board. my medicine did not make me sleepy as the pain made me hyper....so my pain meds made me normal, and I loved my job....life was good, until I moved. darn.

I just figured out why my pain is so bad. I have sympathetic maintained pain syndrome. I have all the symptoms. I will probably be diagnosed on the 22nd of may.

I hope you find your balance,as even with bad pain a balance can be found.....then peace takes over:winky:

evil DEA
 

Has anyone noticed that the American Pain Foundation website has been shut down?

http://www.painfoundation.org/

Their website navigation had a separate page devoted to TOS. Shows that at least SOMEONE acknowledged the pain we live with.