I believe I recall some have had extreme nerve damage and experience specific atrophy due to that reason.

The explanation{that I remember} was that the nerve is injured beyond repair and it sends a messed up signal to the muscles, so that no use or therapy, etc, can restore those affected muscles.

info pages/sites-

Handchir Mikrochir Plast Chir. 2006 Feb ;38 (1):42-5 16538571
["True neurologic thoracic outlet syndrome" -- anatomical features and electrophysiological long-term follow-up of lateral thenar atrophy]
[My paper] U Hug , F J Jung , M Guggenheim , V Wedler , D Burg , W Künzi
[Atrophies of the intrinsic muscles of the hand are considered to be a typical symptom of the "true neurologic" form of thoracic outlet syndrome (TOS). The classical form of this entity was described as early as 1970, consisting of a cervical rib or a prolonged transverse process of C7, complete with a fibrous band to the first thoracic rib, resulting in atrophy of the intrinsic muscles of the hand. All our TOS patients presenting with such atrophy displayed anatomical findings consistent with this definition. Based on this observation, the TOS classification currently in clinical use, which differentiates between "disputed" and "true neurologic" subgroups of the neurologic form, is reviewed. In all cases of "true neurologic TOS" with atrophy of the intrinsic muscles of the hand, the lateral thenar muscles are affected first. We present the electrophysiological long-term results of such thenar atrophies of seven patients with eight operated extremities after brachial plexus decompression. The amplitude of the neurographically measured potential over the opponens pollicis and the abductor pollicis brevis muscle, respectively, was defined as quantitative parameter for muscles atrophy. Neither distinct reinnervation nor progressive denervation was evident in any of the cases after a follow-up period, on average, of more than five years post surgery. These findings are in conflict with clinical observations reporting a major postoperative improvement of the motor deficits.


Mesh-terms: Adolescent; Adult; Brachial Plexus; Cervical Rib Syndrome, diagnosis; Comparative Study; Decompression, Surgical; Diagnosis, Differential; Electrophysiology; English Abstract; Female; Follow-Up Studies; Hand, surgery; Humans; Male; Middle Aged; Muscular Atrophy, etiology; Muscular Atrophy, physiopathology; Thoracic Outlet Syndrome, classification; Thoracic Outlet Syndrome, complications; Thoracic Outlet Syndrome, diagnosis; Thoracic Outlet Syndrome, physiopathology; Thoracic Outlet Syndrome, surgery; Time Factors; Treatment Outcome;]
http://lib.bioinfo.pl/meid:50390

[Clear cut cases of vascular TOS are somewhat easier to identify than neurogenic TOS. Symptoms with which the patient may present to the physician (in addition to those listed above) that are indicative of vascular TOS include:

* Swelling of the arm/hand
* Coldness in the hand/finger
* Bluish color of the hand/finger
* Wasting (atrophy) of the hand (in severe, chronic cases of TOS)

Neurogenic signs are much harder to diagnose definitively as thoracic outlet syndrome. In severe cases, (e.g., hand muscle atrophy), it may be possible to clearly identify compression of the brachial plexus and, although surgery is performed, it does not always resolve the symptoms. For patients who present with sensory symptoms, (e.g., paresthesia, numbness, or pain) there is no test to definitively reach a diagnosis of TOS. Therefore, some health care providers feel that thoracic outlet syndrome is overdiagnosed while others think it is underdiagnosed. Both, however, agree that:

* No single test is reliable to definitively determine a diagnosis of TOS
* Electrodiagnostic studies are typically normal
* Surgery results in little improvement of symptoms

Symptoms follow the pattern of deterioration of the nerve. The aching is related to the muscles that are innervated by the compressed nerve. The compression of nerves is accompanied by complaints of intermittent paresthesia and, finally, numbness. When tested, patients will initially exhibit symptoms only during provocative tests of arm positions and, as the deterioration continues, patients can maintain the elevated position for less and less time due to intense discomfort. Deterioration to the point of muscle atrophy of the hand is rare.]
http://www.medifocushealth.com/RT017...t-Syndrome.php


and the full Google results for the search-Atrophy+TOS
http://www.google.com/search?q=Atrop...ient=firefox-a

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"

Someone in our group, who we all met at my house, has severe hand and forearm atrophy due to her TOS and RSD.

I assumed it was from lack of use, but now I think it also had to do with the RSD action - as SeaP says, severe nerve damage.

I do not have atrophy per se yet - I have always had FAT arms / hands / forearems, so SWELLING is my problem.

BUT, I lost most of my arm hair, and some of my body hair with the RSD. Not so bad...huh? I like hairless...haha. But thank goodness I had THICK head hair, as now that it's thinner, it's still OK. It is a LOT thinner than before TOS. Dr. Bluestone attributed the hairloss (as did other docs) on my RSD areas due to the RSD patterns we identified. I did not know ahead of time that he was looking at HAIR LOSS, I was showing him pain areas.

Just FYI.

good info on muscle thinning; not a term I had heard of before but obviously a concern.

what about loss of bone density for TOSers who aren't able to tolerate rigorous exercise for a long period of time. is it a problem? are there any suggestions to avoid or reverse it? i gotta say it has been a concern for me.

When I had a MRI of my right shoulder (2/28/06) 2 months after the initial onset of my first shall we say....."Road to Hell thoracic outlet shuffle " it showed some atrophy of the subscapularis muscle. I hadn't had any diagnosis at the time of anything else. Just a numb arm and nobody knew why.