Hi to everyone,
I'm F/47, dx tos late jan 09, had rib removed May 7th.
otobponca, I'm so glad to hear your postive results from your surgery!
Mine have not been so successful. I was in the hospital for 5 days went home, noticed my incicsion was not looking happy, went back to doc only to be put back in hospital for another 4 day to get rid of the infection! I still have much swelling, pain and numbness all the way down my arm and my fingers. I still have "pins and needles" and stingers. Now since the surgery, I've a deep cough (which we all know the painful results of those ) and the feeling of an ice pick(or a hot iron) shoved through my chest and out my shoulder blade! My pm says it's just the nerves settling down and it may take a while 6 mo to a year!The surgeon I had, stopped seeing me at the end of May. I told him of my issues and was told that I must be crazy, cuz non of his other patients had those problems
I have nothing left to say to him. I also now have no insurance, no medical or ssi allowed b/c I have a retirement fund, no sdi, no w/c and waiting for an answer from ssdi. I hear it could take years! they'll have to look for me living under a bridge or something by that time
Thanks for listening, I don't know what else to do. PT is too expensive, thinking about maybe finding a good chiro or pt or doc to date, know of any single
Kathy

ps: is there another thread for TOS or is this the one?
thanks

I copied this from the Intro section for kfarneti.

Welcome, I'm sorry to hear you aren't recuperating as well as you hoped.

surgeons have been known to say such dumb things...and I have read before that they dump patients that are having issues still..

have you or a friend had time to double check on that surgeon, was he a bonafide TOS expert or just a wanna be...

How bad were your pain level and symptoms at time of dx?

and how do they compare now?

many that had surgery took over a year to recover from the nerve sx, and you also could have some other things going on that that particular surgery didn't address.

some will eventually get RSD or Fibromyalgia over time....
and some will get scar tissue regrowth that creates adhesions and more sx.

If you can find a very good expert /advanced chiro that understands a bit about TOS and is into using many of the modalities {ultrasound, low level laser, IF stim, c1/ c2 adjustments} as well as hands on soft tissue work, then you might just find someone that can really help you.

Mine really has helped me by resolving severe spasms, triggerpoints, flares of joint/tendon pain, posture improvement, and lately low back/sacroiliac & foot/heel pain.
I didn't have Ins. at the beginning and he was very nice to give me a discount for cash.

If you look for a chiro or even an advanced PT person, be sure to have an evaluation or at least a interview type first visit with many, before committing to one.

Our useful sticky thread is a crash course in TOS & therapy info - post # 1 there is a good starting place. You'll probably get brain freeze after awhile but take a break every so often and it will soak in for you.
http://neurotalk.psychcentral.com/thread84.html

It helps to learn as much as you can before looking for a DC or adv. PT or even your next MD.

i was all set to have my surgery in 2006. my surgeon was a bona fide tos surgeon and came well recommended. i started asking this doc more questions, and did not get intelligent answers. i cancelled the surgery. later on i had the test where they raise up ur arm and it turns blue. (this surgeon did not perform that test.) my arm did not turn blue. (my tos is much less severe than most of the folks on this site.)

the surgeon you describe sounds awful. hardly any of them have a good bedside manner, and they don't really know a lot outside their very narrow specialty. i hope u find a doctor who will not just pass you off like a football.

it always helps me to have some kind of goal for myself that works as a light at the end of the tunnel (wrap your troubles in dreams). it could be something as simple as "i want to learn finger painting to keep my mind off the pain". we all heal better if we can learn to manage the stress of being ill.

First, welcome new TOSer buddy,

Infection in addition to, huh? no fun.

ssdi takes a while. I suggest you contact your US Congressperson and ask for them to oversee your application, as you have no funds to push your app through. If they're worth your vote, they'll do that for you. This is one thing they can do. Or maybe I'm just bragging on Hal Rogers - KY US Congressperson.

I have been on high risk ins. Check with your state's high risk pool. take a higher deductible. premiums are high but it's insurance. Stay in your PPO, though.

I think even if you're approved for ssdi, it takes 2 yrs from the date of app - or the date you're deemed medically unable to work???? - before Medicare kicks in.

Here is a link to the American TOS Association:

http://www.atosa.org/

Another TOS board to visit:

http://www.dailystrength.org/c/Thora.../support-group


wikipedia: for better understanding...

http://en.wikipedia.org/wiki/Thoracic_outlet_syndrome

There's just so much it is overwhelming. Ask if you have specific questions or concerns we can help you with.

You may want to check your medical records for possible answers and errors in your care.

TOS is not easy to live with... wish you the best results possible. Be careful who you let work on you. They need to be experienced with TOS.