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.

I think for RSD they do bone density scans - as the bones thin over time from it??

I think even walking can build or retain bone density.
It's been awhile since I read up on it.

Ok got some info- long articles so I'll just post the links-

http://www.newstarget.com/010528.html
http://www.cybermacro.com/articles31.html
http://www.connecticutcenterforhealt...treatment.html

Gentle Exercise
Books
Arthritis: What Exercises Really Work – Dava Sobel (Robinson Publishing, 1996)
Exercise for Healthy Ageing (Help the Aged)
Keep Moving, Keep Young: Gentle Yoga Exercises (Headway, London, 1995)
Rosie’s Armchair Exercises – Rosita Evans (Discovery, 2000)
Strength and Balance Exercises for Healthy Ageing (Help the Aged)
Water Exercises – Anthony Harris (1979)

DVDs and Videos
Barbara Currie’s Shape up with Yoga (Our Video Company, 1993)
Be Strong, Be Steady video (Help the Aged)
Chair based Movement 4 Fitness Improvement (DVD), tel. 07747 041 486
Jane Fonda’s Yoga Exercise Workout (Warner, 1993)
Ruth White’s Stress Release: Gentle Exercises to ease the Pressures of Modern
Living (Storm, 1992)
Step to the Future video and DVD (Help the Aged)

This "rare" form of TOS, is actually, not so rare, but possibly under-recognized, under-reported.

Once a person is dx'd with RSD, any muscle loss, even in dermatomal patterns (not usually a "sign" of RSD, unless a specific nerve is damaged, and the consequence is RSD/causalgia), then most doctors will [want to] believe that observed muscle loss is connected to either pain guarding, disuse, pain avoidance, hysteria, attention seeking; and not, a loss of nerve function. Also, even when they accept that there is "dermatomal" dennervation signs, they may still believe in the RSD dx, as having caused TOS (from muscle atrophy causing compression on the brachial plexus). Obviously, not all docs feel this way, but, in my own experience, anything is possible.

Unfortunately, once a person has signs of muscle wasting, atrophy, nerve dysfunction, motor loss, that IS NOT a consequence of RSD, most doctors will also [still want to] believe that this is so rare, that it couldn't be an actual nerve dysfunction (looping disbelief medicine), and try to attribute [it] to anything else, including pain guarding, disuse, pain avoidance, hysteria, attention seeking, than seek the actual cause of this nerve dysfunction.

Why? I assume that once a patient has observable wasting, atrophy, motor dysfunction, from a real nerve dysfunction/dennervation, the doctors have been taught that regaining what has been lost, even after nerve decompression, is quite low, statistically. Why should this matter? I assume that many docs, who don't see "success" in a patient's future, may not want to get involved, even though, correcting the nerve dennervation, and halting its progression, should be considered, heroic [my opinion], and preserving nerve function, whatever is left, should be a priority to everyone.

Anyways, what one would think would be a sure indicator of a true neurologic dysfunction, most doctors would rather believe, especially in the case of a possible TOS dx, that there is actually something else at play that could better explain this muscle wasting (nerve dysfunction).

What does that mean? Those whose atrophy, wasting, is a consquence of a BP compression, will more than likely have their "wasting" attributed to pain guarding, disuse, inactivity, (being a weenie) and, they will more than likely not get the timely diagnosis that would help them actually preserve nerve function.

What does that mean? That they will either have to deal with their condition on their own, in the hopes that it does not progress to very severe deficit, or try to get help, but have to convince every doctor that they come across that they indeed use their hand(s), finger(s), wrist(s), and are not "faking".

It is very difficult to develop wasting, especially wasting in a nerve dennervation pattern, without immobilizing the hand/arm/fingers in question. One would be surprised how much muscles "move" even when not doing much. It is quite difficult to remain still, even when something "hurts".

As a matter of fact, things that hurt, especially from a nerve dysfunction, actually cramp, burn, sting, go numb, curl, etc., and a patient is actually more likely to keep it moving in order to distract oneself from those symptoms.

So, the likelihood of having observable wasting, in a nerve dennervated fashion is highly unlikely the result of "disuse", "inactivity", "pain guarding". Most docs don't get this, as they probably haven't had this pleasure.

Apparently, though, there are people (notice, I did not use the word, patient) that go from doctor to doctor, feigning curled over limbs/fingers, for attention, or proof of disability, and/or demonstrative of hysteria, and that is what is the first thought in any physician who looks at a deformed, wasted, atrophied limb, and/or ulnar contracted fingers (regardless of gender).

If they do recognize that the atrophy/wasting is occuring in very obvious nerve dysfunction patterns, they will more than likely want to believe and diagnose that this patient is actually suffering from a more "fixable" nerve compression syndrome, like carpal tunnel, cubital tunnel, trigger finger, etc, than consider the more "rare" likelihood of a true neurogenic TOS.

Now, that is not to say that there have been no patients that had their TOS nerve dysfunction recognized and had timely intervention, but that may not be the norm.

True neurogenic TOS does occur, and in my opinion, isn't as "rare" as is advertised. Most people who present with very obvious dysfunction, in a very obvious nerve dysfunction pattern, often do get diagnosed and get some chance to halt the nerve dennervation.

Others, who get this "disuse", "inactive", "guarding" label, may not be as successful. Those whose obvious nerve dysfunction, even when supported by emg/ncs, may still be doubted, for any number of reasons. This is why it would really be nice if there was more "belief" in the possibility for this "rare" disorder, and less bias, less belief that patients are actually "doing this to themselves" for attention. Wouldn't that be nice.

Oh, and muscle wasting/atrophy can be viewed on MRI. Remember, nerves innervate different areas of the body. These nerve dysfunctions can start at the spinal nerve, down to direct compressions, resulting in wasting/muscle loss (despite use) in the muscle sets that they are meant to innervate. The loss of muscle mass on MRI, can be attributed to nerve dysfunction, but a certain assymetry may be expected if doctors think that certain people [read, women] even those who lift weights, favor the dominate side of their body, and are naturally "wasted", undeveloped on their non-dominate side.

It is the correlation of visual studies (MRI, MRA, MR Neurogram, etc), electrodiagnostics (emg/ncs), and clinical patient assessment that would hopefully allow as accurate a diagnosis as is medically possible. I would hope that social bias (towards patients on W/C, ligitation, disability) would not play a part in the workup of a patient.

Unfortunately, I don't think this is that case. Best to all.

Anon - Very well said!! My situation with traumatic onset following vaccine reaction is wihout doubt VERY rare - and living in one of the MOST medically conservative states (IL, home to the AMA and other med orgs) and communities, put me at a very definite disadvantage from the start. Not to mention as an iatrogenic injury I was black-balled from real treatment by my PCP's medical group, a regional giant (courtesy their legal geniuses, I'm sure), and browbeaten by any colleagues of his I sought out. All of this though I never blamed my Dr in ANY way for the outcome of the shot, told him so, and that I had no intent to sue, but wd pursue vaccine injury compensation when we knew my disability was permanent and my medical bills had risen well into the thousands.

What was surprising to me was given numerous EMG/NCVs with positive results and visible atrophy, plus positive sensory test results and motor testing that showed my right, dominant hand to be less strong than my left, many resisted the idea of my having TOS surgery, (regardless of pain, quality oif life, etc., failure of therapy and other modalities to improve my confdition, etc.) My PT, PCP, pain mgmt Dr, a couple of neurologists and others were adamantly against the rib resection.

After the surgery revealed a fourth scalene wrapped around C8-T1 and tight below the vein, and a follow-up EMG/NCV showing a greatly improved nerve conduction velocity (75 after, while prior it had been 49), it was still treated as a matter that should not have been done! Of course, almost all of these persons were employed by the same medical group as my PCP, and I believe that by having the surgery I was potentially opening them to greater liability, and also by the surgeon finding the cause, the 4th scalene, proving the dx beyond a doubt, . Since I had NO sx before the vaccine, proving the TOS dx was yet another blow (potentially) against them.

Funnily in my vaccine injury case they did try to argue I had TOS all along, prior to the vaccine, but had no reason to offer to the Special Master as to why I had NO sx until after the vaccination. Thus I won the case.

Then after I won, they asked for an IME with a Dr at U of I Chicago. In his report he says he doesn't believe I EVER had TOS at ALL!!!

Go Figure!!

I did see some regrowth of SOME muscles 18 months-2 yrs after pec minor tenotomy - medial cord compression was actually the cause of the denervation. The remainder of atrophy is permanent. Left side progresses - what to do?

beth

Lots of good info here....thanks everyone.

Both my X-ray and MRI/MRA showed "thin subcutaneous tissues" and drooping shoulders. I've been told that my right hypothenar is atrophied (due to severe carpal tunnel or double crush syndrome). One TOS specialist told me that my intrinsic muscles were atrophied, another said they weren't.