That is good to know! Thanks!

sara had her follow up thurs/ Surgeon thought she was doing as well as expected. She is actually stronger now on the surgical side then on the non surgical. He said he would not operate on the other side for 1 year. Right now she does not even want to think of another surgery as she still has really bad nerve pain in forearm and arm/ started on lyrica. I understand this takes a little time to build up in system and work. Anyone with experience with this? What time frame should we give it? Epsons salt baths are the best. I do believe she would live in the bathub if she was able to. She has had a bad habit of keeping arm in sling position for about 6 months now. it seemed to help the tos pain at the time but she has been working on straightening and keeping elbow straight since surgery. This has also seemed to hlep. This site is wonderful. I will try and keep saras story up to date in hopes that her experience will help others in thier TOS journey.

Sorry, I've been away from the forum for a few days and I just saw your post. My ulnar nerve damage is so bad that my left hand is atrophied from it; it's called Gilliat-Sumner hand, perhaps you're familiar with the term? The interosseous and thenar muscles are gonzo, due to an extreme delay (we're talking decades!) in my nTOS diagnosis.

But I was told by a sweet electrodiagnostician from New Zealand to "never give up on your nerves!" And after my L first rib resection, during which my surgeon found a tough, ligamentous cervical band which was creating a huge dent in my T-1 nerve, the decompressed ulnar nerve s l o w l y started to heal, in fits and starts. It was not happy, mind you, and let me know it, often and loudly! But the pain was different than before surgery, hard to describe (it's been almost ten years now) but what your daughter is telling you sounds mighty familiar…

And you're right, narcotics are pretty ineffective when it comes to treating nerve pain. I didn't like neurontin or lyrica because of the side effects (ok, they made me fat! ), but mostly because I didn't find them all that helpful in the first place. What I ended up taking for the nerve pain was topamax. My pain doc also prescribes amitriptilyne (also helps for sleep) and namenda on an off-label basis, for nerve pain. They do seem to help.

The nerve glides I learned how to do in PT were also very helpful, as were several gentle stretches and stuff I learned how to do with the foam roller and exercise ball there that I still use at home, today. Not as much as I should, mind you, but there you have it!

I hope that Sara continues to make progress every day; I know it's slow going. She is very lucky to have you in her corner. Keep trying different things, and soon you guys will have an arsenal of tools to fight the TOS monster and come out on the winning side.

Then you can find yourselves a TOS newbie and show 'em how it's done!

Hang in there, it gets better I promise.

Alison

You might want to search the forums here for Lyrica... can be very difficult to get off of it, and for some it has too many side effects..

There are some threads on our Medications forum-
http://neurotalk.psychcentral.com/forum72.html
More on our other forums too.

So the Lyrica lasted a day. She developed a rash and we had to stop it yesterday. Tomorrow we start Trileptal ....which I believe is a lot like topomax....am I right? Nice to Hear from you seapines. It is so nice to hear these reassuring stories. Saturday and Sunday were such long painful days I just didnt think they would end for her. Today though she seems to be on the upswing. Gives me (and sara) hope. Sara has said the exact same thing about the pain as you did SeaPines " it still hurts but hurts different" As far as PT the surgeon said he wasn't a big PT kind of guy and felt like if she was moving and working on ROM the rest would work itself out. I have mixed feelings about this. I hated PT during our little PT trial prior to surgery. It was expensive and time consuming We ended up in the ER several time after PT sessions. After reading on this site I am learning that some of the things they were doing was maybe not so smart ( like hand bike) and when she told them it hurt they just said kept on going. On the other hand I feel like if I knew and trusted someone around here I think it would benefit her...problem is Im not willing to just try one on their word that they know what they are doing as obviously they don't. I contacted a lady here in Frederick where we live concerning the feldenkrais method but she was not trained in tos therapy. I am wondering if I did find one would the insurance pay for it like they would pay for PT? Are there online stretches that kind of show us the way? Im learning more and more a lot of this stuff is up to me to find and learn about as most people ( even medical professionals) don't really know much about it let alone how to treat it. I gave sara a massage on her neck and back today. The knots are totally gone on the surgical side and her arm and hand function are improving and getting stronger. All and all its been an encouraging day.
Keep the occasional words of encouragement coming. They help!!!
Thanks

so sara took her first trileptal last night. Two things happened . The burning pain went away (yes!!) and she didn't sleep (boo) I figure she will adjust to the med and sleep soon. She also has this ache in her back between her shoulder blades that the trileptal didn't help. Has anyone else experienced this? She says its a different pain then the TOS pain. Percocet doesn't seem to make much of a difference with the pain which is why I was thinking it was a nerve pain thing. She is just now 3 wks post op. Its been slow and frustrating and painful but better in lots of ways. I think we just were too late it getting it dx and treated to make this easy. I also started her on B12. Im learning more and more and am finding I am going to have to do my own research on this to help Sara.

[ache in her back between her shoulder blades]

It could be the rhomboids - they will flare up easily - especially if shoulders are forward of body, they get easily fatigued and will become very painful..

A simple test is lay flat on floor (if that is tolerated) and let gravity drop the shoulders down, relax and do that many times a day.
Then as tolerated when upright be aware of shoulder position.. not pulled extremely back just in line w/ body.
Only as tolerated since soon after surgery...
if pain fades away then it is a positional thing..

https://www.google.com/search?q=rhom...+pain+symptoms

Oh my gosh I bet that's it! Thanks so much!

I get that pain if it neglect my shoulder posture...

Plus slumping or rolled shoulders closes down the exact area that the surgery tried to make room for..
long term - posture is a big thing to be aware of.

I wonder if they weren't pulled during traction during surgery as well. Should she roll a towel up or something and lay on that or just lay flat on the floor?