I have meant to post this and keep forgetting - dang brain fog! - but this seems an appropriate thread to add some small bit of encouragement for those who like me have seen wasting of the muscles in the hand. In a nutshell for those who don't know my story:

I was injured in Feb 2003., dx'd in Aug. '03 and had surgery Feb '04. So I was not misdiagnosed or undiagnosed for a long time, mostly because I found the old MGH board VERY early on. But my injury (due to a vaccine reaction) caused my rt shoulder to fall 1 1/2 inches almost overnight (similar to a stroke victim) and the full weight of the shoulder girdle to suddenly bear down, instead of gradually, on the brachial plexus. An autoimmune reaction to the vaccine inflamed the brachial plexus and also the spinal accessory nerve, which caused unbearable pain for a week or so unhelped by any pain meds and brought on my first experiences with tingling, numbness, color and temperature changes, etc. The pain settled to a bearable 4-5 after that week or so, and I was told I would be fine within 6 months, but that didn't happen.

Why not? Because I was predisposed to TOS, due to my build - thin, narrow shoulders and long neck, short (at 5" 2, I've been reaching overhead my entire life!), and an extra scalene only 25% of the population has - a scalene minimus, which was wrapped all around and through the brachial plexus and pressing up against the subclavian vein.

At any rate I went through PT 2X, chiropractic, saw specialists, had numerous tests, MRIs, EMGs, pain meds, then at 6 mos flew to see Dr Togut and was dx'd with TOS and RSD. Came back and entered a multi-disciplinary pain clinic ( joke/horror story), got worse instead of better as time went on, had to quit working, by Jan '05 pain was constant 8-9 and sum existance was dragging crying self from bed to couch and back. I couldn't BEAR for my kids to see me like this. I couldn't bear to LIVE like this. I would take any chance of getting better, because staying like this just wasn't an option I could accept.

OK, back to the muscle atrophy! Prior to surgery my right hand had shown wasting in several areas. The mound at the base of the thumb had flattened out, the muscles there completely wasted. Most all of the muscles at and near the base of the thumb visibly were atrophied. The pinkie also showed atrophy, as well as the outside edge of the hand, and there was a visible depression or trough between the pinky and ring finger on the back of the hand. Worst of all, I lost a great deal of muscle between the first finger and thumb, front and back, so my thumb falls away from the hand. All this meant I had a very weak pinch grip and a reduced grip strength.

After surgery in Feb 2004 for rib resection, and Sept 2004 for pec minor tenotomy, I noticed very little change over the next year to 18 months. But this is the time frame given to expect for nerves to reasonably regenerate, so that is likely to soon to expect muscle change. I can tell you that by 6 months or so ago, approximately 2 years out from the second surgery, I was noticing a return of some muscles that had been "gone" for more than 3 years. These are mostly some of the muscles at the base of the thumb, and the thenar mound, and I believe the ring side of the pinkie and the palm below it. I know my pinch and grip strength scores are improved.

So I feel happy to have regained what I have, and want to share that you may expect to continue to see gains even this long after surgery. Muscles die because nerves aren't generating power to them. Once nerve power has been re-established, it IS possible for some muscle growth to re-occur. I know I won't regain all the muscle I have lost. Some of the nerve damage is permanent. There has been NO progress between the thumb and first finger - I don't expect there will be - that is too severe. And I don't think the pinkie will be entirely normal again - it too drifts away from the hand unless I consciously pull it in. My hand still shakes, I still drop things - but a little less than before, maybe. And when I look at my hand, I see a little more muscle than before. Small things maybe, but steps in the RIGHT direction for a change!!

The rapid atrophy of the muscles of my dominant hand also helped spur my decision to surgery. At that time my left side was less affected, it's now worse than my right, and the hand is wasting in exactly the same places, although less advanced. The surgeries did help the TOS issues, but my RSD came unglued in response. It became full-body and life again was unbearable. Treatment with experimental IV ketamine helped for months, but ultimitely insurance refused to pay for it. A spinal cord stimulator has brought relief and better quality of life with a daily pain around 4-5 again. This I can cope with! But still I wonder - what do I do about that left side? Watch it waste away and do nothing? Wait til it gets as bad as the right side did? Longer? Til the spinal cord stimulator no longer is effective?

Ok, just meant to post some encouragement, ended up with a bio and a dilemma of my own!! LOL! Take what you want, ignore the rest I guess, focus is not my strong point today obviously!

beth