United Brachial Plexus Network, Inc.

Hello All,
I wanted to ask anyone on this foum if they have any experiences with thoracic outlet syndrome and myofascial pain. I'm not sure how common it is with us OBPI'ers out there. My BPI specialist seems to think I present with the symptoms of TOS. I basically have burning pain in my neck and arm. Doc says this is likely due to scar tissue from my initial birth injury as well as compression of the nerves in my thoacic outlet on my BPI side.
Also seems to think I have myofacial pain(think thats how you spell it), whereby again this pesky scar tissue agrivates the nerve roots that innervate my trapezius muscle. I wanted to seek advice from anyone outhere on the boards who may be able to give it as to what options there may be. I have done PT, been on neuontin, tried to correct my posture, and now recently am undergoing acupuncture but I don't know whether it will be helpful. My BPI guy is a surgeon and has offered surfery for TOS but for the myofascial pain he says the only guy he knows that gets good results is in Nebraska(I live in Pittsburgh) which is a little far. Anyway sorry for rambling but I guess I'm seeking advice on ways to reduce the ineviable scar tissue that forms as a result of this injury without surgery(or with, if people have had good results)
Thanks,
Becky

Hi Becky

Sorry I'm late getting to you, (I don't always check the boards, but tell everybody) lol. You didn't mention how old you were... I'm going to be 59 next month. I have been battling with the Myofacial pain syndrone for ages now. I can't take the neourton (sp) as I toss it right back up and walk (if I can) into the walls. I was told that is the only med that can help "nerve pain" I was also checked out a few years back for the thoricic outlet thingy at the U of MI but checked out ok. ALl my records say Myofacial pain secondary to Erbs Palsy. Yea, they actually use that phrase now. Wonders and wonders.

I have had 2 or 3 surgeons tell me they would not do the surgury for they fell I could come out worse than I already am. One actually got upset that I inquired about it and told me I probably could find someone to do it. I didn't want surgury, but was exploring options. One of the many reasons I have been denied my disability was I had not sought out surgury for my problem.

I have problems with pain meds. They either don't work or I get totally sick on them and as long as it doesn't work anyway I didn't take them. Now I am on Vicodin which takes a little of the edge off. At least I can tell when it's wearing off.

As for the scar tissue. It does build up. I had a really "older" osteopathic dr that understood "all of it" he had me hang from a bar with just my tip toes touching the floor. You could feel the pull and yea it did hurt, but he said that would help keep the scarring from building up so fast.

The long and the short of it is, I guess I don't have any answers but I do know what you are talking about. I got lucky and starting having what I called headaches when I was about 30. Actually its a pain in my head. Try explaining the difference to a doctor about that one. So many little things are involved that are different with each of us and I got my share too. LOL

I also had a massage gal who helped me a lot esp with my head pain. My darned memory wont' let me remember what she called it, but eventually it will come to me. That's the fibro fog setting in. Then too, I now have osteo so the doc just lumps everything together under the pain syndrome.
Email me if you like and we can talk, maybe then I can think better. lol lol.

Sharon from Michigan and looking forward to springtime. 58 lobpi

Hi, just to let you know, Neurontin (gabapentin) is now not the only med for neurogenic pain (nerve pain). There is now one called Lyrica (pregabalin). It works well, with lower doses than Neurontin and with fewer or no side effects.
Marieke

Sharon,
I'm curious, is headache pain the worst that you deal with? I could not tell from your post. I'm 26 years old at the moment. Also, why would your surgeon say that he could make you worse if you had surgery? It's all so frustrating. You think your lucky enough to live in an area where there actually is a brachial plexus specialist and then you go to him and even he doesn't know what to do. Sigh.
Thanks,
Becky