Neuralgic Amyotrophy

[lkrein]

Hi - I need information.  My diagnosis is neuralgic amyotrophy in my left shoulder and arm.  The pain for the first 3 weeks was intense.  I could not sleep.  Took every pill in the house, nothing worked.  Then the pain subsided and the weakness was/is ridicules.  I can't even lift a plate out of the cupboard.  It has now been 7 weeks since the onset and I'm scared.  I am extremely active; swim 2 miles/week, play beach volleyball 3 days/week, bike, gym, you get the picture.  I'm old.... 47, but seriously in great shape.  I had knee surgery (minesectomy) 5 weeks prior to the shoulder onset, surgery is one of the few causes the websites name.

Help me, how long will this last?  Will I regain full strength?   Will using the arm help or hurt the recovery process.  Please respond ASAP, I am kind of freaking out.

[donnyspc]

Sorry, just looked at the dates.
Are you better yet? Still have chronic pain issues?
I am just curious about what I have coming.

[donnyspc]

It took me almost a year to find out what happened. Woke up one day in Feb 2011, with extreme left shoulder pain that made my arm totaly unusable without intense pain. Even to adjust a hat or simply open a door. I had been undergoing regular Chiropractic adjustments of my upper neck for two years prior to that day. So, I ignored it and thought it was part of the "re-tracing" described by chiropractors. The intense pain subsided in a week, and I then found my scapula was winging excessively with minor tasks, like caring a gallon of milk. The chiropractor adjusted my shoulder, (Set my rotary cup back in place) and it helped with the winging, but it was still there.
Come July, I excavated a 900 foot ditch, 40 inches deep for running a water line. I was at the chiropractor every week to get myself "put back in place". He told me that I wouldn't hurt myself by doing the labor and if I could take the pain to do it. But then I had some musles in my neck tear and my rotary cup was getting really painful upon completion.
Come September, I get admitted into the hospital through the E.R. with signs of a stroke, numbness and speech slurring.
The next 6 weeks, I rested and focused on my problems. I figured, Neurosurgeon to help with the unstable upper neck, and orthopedic surgeon for the shoulder "subluxating" without pain.
This is when I found out that I had Neurological Amyotrophy of the Long Thoracic, causing the scapula blade not to stay in place. And digging the trench nearly destroyed my rotary cup. The surgeons ditched me when they found there was nothing to operate on and left me to put the puzzle together on my own, and with the help of my family physician.
Long storry short, Get into physical therapy to strengthen/stabalize the scapula blade and rotary cup as soon as possible. If not, you will be destroying yourself, wearing down tendons, impinging muscles and over stressing muscles that are trying to compensate for the lost muscle activity.
It took me 3 days a week for a month(physical therapy), I literally cried in public the first two weeks of therapy. Partially from the pain and partially from the depression of not being able to function. But I am now much stabler and looking forward to a pain free life that should "spontaneously" come my way some day. Fingers crossed!!!
And if your Physical Therapist doesn't understand your problem, find another that is willing to do some research to understand you problem. (my first PT was a knit wit, but my second PT has been a life saver!)

[Dr_Smita_S]

Hi
Normally some eighty percent of patients recover functionally by 2 years. Bilateral disease and lower trunk lesions have a less favorable prognosis as compared to unilateral disease and upper trunk lesions.
Physical therapy should be focused on providing full range of motion in the shoulder and other affected joints. Passive and active exercises should be started as soon as the pain is under control.
Strengthening of the upper extremity muscles and scapular stabilization may be indicated. Heat, cold, transcutaneous electrical nerve stimulation [TENS]) may be used for pain relief.
Hope it helps.

[gazzagolf]

Hi,
This sounds familiar! I have the same thing it has taken me 4 months to get a diagnosis which i eventually found myself and have just had confirmed by neurologist. There's a lot of info on web mainly under Parsonage trurner syndrome which is same thing. Good news apparently is that it almost always get 100% better it just takes time, anything upto about 2 years they say, my neuro guy told me to keep doing whatever i can as i wont damage myself but not to push too hard, it depends how bad the muscle wasting is. I've had it for 4 months now and its down both sides and effecting my diaphragm a little but i'm off for my first game of golf today since it started! The pain was wild in the begining wasn't it!? i swear the hospital thought i was some soft lad with a bit of arthritis !!! I was on so many painkillers i damaged my liver in the end! At least pain goes after 3 weeks or so and apparently we are no more likely to get this again than anyone else!
Good luck