My name is Destiny and my battle with TOS is very new and has only bothered me for several months. I spoke with my reg doc yesterday and she did a bunch of maneuvers and manipulations to my shoulder and arm. She wants to send me to a neurologist for further testing. I had a bunch of x-rays done and she gave me a scrip for Neurontin for my nerve pain. Im feeling so overwhelmed with all this and don't know where to turn. Can anyone tell me what to expect at the neuro appt? Also does anyone have any advice or good/bad experiences with Neurontin? Any suggestions on a better/safer med to try if I hav side effects on this? No one around me can understand or relate to the pain that I'm going through. I thought this might be a good place to vent my frustration with someone that can relate to what I'm feeling. Thank you in advance to anyone that decides to comment! I appreciate any help or advice that I can get.

Hello,
If you can describe some of your most bother some your symptoms , maybe we can offer some self care ideas you can try, they may help to reduce some of the pain and lessen the need for meds.

How did you get TOS do you know ?
-previous or recent accident /injury, repetitive related, postural issues??

Are you working, what kind of job, or going to school?

Be sure to look thru our sticky threads near the top of the main TOS page - lots of good helpful info & sites listed in them.

Hi! Thanks for replying. Well I can not pinpoint any specific accident or injury that would cause the TOS. I woke up one morning and I couldn't move my shoulder at all. It literally felt stuck in place and I had to force it to move. Ever since Ive had pain on the top of my shoulder (AC joint area?) and it progressed to pain, tingling, and numbness down my arm into my hand. I also feel radiating pain in my neck as well. Its even hard to type this because my arm gets tired, I feel the pain worsen in my shoulder, and I feel tingling in my forearm. I work in a daycare where I am picking up and holding children alot. Also, I have, on occasion, helped my husband with lifting very heavy things that caused multiple strains in my lower back. Also, I usually carry a backpack with me everyday. I have stopped wearing it, though since I've read that it will aggravate TOS symptoms. I am quite large chested and I would say I probably do have some postural issues. What stretches or exercises would you recommend for me? Also, is there anything specific I should bring up with my doctor that I havnt already discussed with her? Thank you for your help!

I think I recall one other poster many years ago , that woke up with instant problems, can't recall their user name though, it may have been on a another forum, long time ago.

Did you get to see the x rays or the results yet?
One of the first steps is to rule out any cervical spine or shoulder issues, also to check for extra cervical rib or anomalies.

Some quick thoughts-
hyper mobile?
previous injury to head, neck, shoulder? - whiplash, falls, sports - whole life? These can be a factor in creating scar tissue, adhesions, restrictions and as we age the effects tend to show up more, esp if we have done repetitious or other aggravating activities. IMO

This site has some positional testing images that may help to determine if more in depth TOS testing should be done.
images in the middle of the page -
http://www.nismat.org/ptcor/thoracic_outlet/

Personally some of the stretches they show are too extreme for many of us w/TOS unless done very slowly and gently.
mine is mild most of the time now & I could only do those if I was really warmed up and did a good cool down and didn't force any part of the stretch. If I stretched as much as I could , then I'd have delayed pain hrs to days later. I much prefer Sharon Butler stretches & suggestions.


In the sticky post #1, definitely check out the info on trigger points, Sharon Butler's book or website (info on fascia restrictions as a cause)
there's just tons of info in the whole thread too.
http://neurotalk.psychcentral.com/thread84.html

Hi! I did get a call from my doc office yesterday and all they said was that my x-rays were negative. I'm assuming that means that they found nothing bone-related that is causing my problem. There is one incident many years ago that could have contributed to my condition now. About 9 years ago, I was involved in a car accident. I was a passenger and we were rear-ended by another vehicle. I was stupidly NOT wearing a seatbelt and was thrown forward and hit my head on the windshield. I never went to the doctor to have it checked out. Not the smartest move I've made, that's for sure. :/ Could that have caused scar tissue to build up and cause the TOS all these years later? I have my first PT appointment on Thursday so I'm looking forward to hopefully starting to relieve this pain. I know it can be a long process, but I'm ready to fight..I always have been. I won't let this monster get the best of me. I want my life back!

My case was rather extreme 3 bad car accidents, repetative job caused muscle imbalance etc TOS.
Sometimes long hard fight you cannot give up no matter what.

Things I have learned over the years:

Make sure you get copies of all tests DRs reports and keep them in order in a folder.
If you get a DEFINATE DX of TOS make sure that all treating DRs get copies of this, Chiros especially....some can be a big help and others can cause more damage.
Surgery is NOT always a cure-all for everyone especially if you are
true neurogenic, unless you end up with vascular complications.

Can't type anymore but hope you get the jest of what II am saying...
and as you said NEVER give up fighting to get your life back at least as close
to a normal of a life as you can get. Learn to adapt.

We have all been there and some of us are still fighting we understand and you came to the right place.