i have a severe case of true neurogenic TOS which, unfortunately, went undiagnosed for many years. and i have extensive hand atrophy as a result. according to the medical literature, it is very rare for compression in the BP to be allowed to progress this far. my left hand is what they call "end stage" - the right hand is trying to catch up with it.

but i can assure everybody, this atrophy is NOT from a failure to do enough finger push-ups at the hand gym! it is rather, as jo said, from the untreated nerve injury in the BP leading ultimately to irreversible nerve damage- , which happens in some cases... the muscles innervated by the affected nerves simply are not getting enough blood, oxygen and nutrients to stay alive and healthy, so eventually they, too go the way of the nerves and start to waste away (much like my mind). sadly.

however, that is not to say that anyone experiencing a thinning of the muscles affected by their TOS (e.g., chest, shoulder, arm) cannot benefit from the right type of gentle bodywork and PT. i do feel, though, that it is generally not a good idea to try to undertake something like that solo. maybe it's just me, but i need a professional to show me how to do stuff, at least in the beginning... if i try to do too much on my own i'm just askin' for trouble!

and it is not necessary. the stickys up top are loaded with info on good programs for TOS'ers. everything from edgelow to hellerwork, i think, is represented. so while the idea of starting to do some gentle nerve glides and shoulder stretches and so forth sounds great - i would suggest that you do this with the guidance of a knowledgeable professional from the outset-

very important, not only for the successful maintenance of any home program we can develop out of the experience, and the education it affords - but as we all know, we need to be sooooo careful! there are things "normal" people can do with no problem, which are actually destructive for a TOS'er. OK, well - me. i can read all about it and still get it bass-ackwards. every time.

and lots of it is counterintuitive. so the challenge always seems to be, finding a good person to work with you - at least in the beginning - to come up with some good basic stuff (breathing exercises, glides, stretches; nothing fancy!) that you can work with and that will not flare you up, discourage or heaven forbid, injure you.

i'm puzzled as well (linda, obviously i'm speaking of what your neuro seems to be saying to you so forgive me because i know it is third-hand [pun intended]) as to how a regular MRI can show up "thinning" of the muscles. did he explain to you specifically which muscle groups he is concerned about - maybe that would be helpful... you mention shoulder exercises, but i don't want to assume scapular muscles are the issue if that's not the case. subclavius, maybe? i'm confucius-! never had an MRI show up a soft-tissue result. but i realize i'm probably missing something (usually the case with me!). i do think his concern is a valid one - don't get me wrong!

anyway, hand atrophy = very advanced sx of a rare type of neurogenic TOS. that's the point i was trying to make. not much one can do about it, including surgical intervention once it's gotten to that stage.

not so for other types of muscle atrophy - if nerves can be regenerated, muscles rebalanced and graaaaaadually strengthened (once the pain sx are managed - NOT before)... then i believe there is always hope that the "thinning" process can be reversed. i am certainly no expert, not by a long shot. but i do know, we have a ton of info on this very site! the stickys are a goldmine and there have also been some very good threads on PT, bodywork, etc. - so use the search and advanced search functions and i am sure you will find great posts that may be very helpful to you as you begin to develop a personal plan.

dr. T is great, but he is only one guy. i agree to do "nothing" doesn't feel right, either! i am kind of in the same boat. searching for stuff i CAN do, even if it's pretty passive... got to keep the blood moving somehow.

anyone who works and runs a family is not leading an inactive lifestyle. so i wouldn't worry too much about that aspect. but definitely it makes sense to look at some of the programs that have been specifically designed for TOS'ers. (where the heck is shelley with that MAT; maybe she'll take a roadtrip to NJ and show you how to do that!)

finding the moves that work for you is key. that's what has been helpful for me, anyhow. and i'm pretty past points!

hahaha

alison
"Be Brave"