winged scapula -5 YEARS NOW!

Hello,

I am a 29yr. old female with winged scapula. It's been 5 YEARS NOW w/this condition and I'm furious to find out through my research here that I've been drug through the mill by my doctors on this! I definitely have winging in my right shoulder blade wich was the first to appear. But I may also have it as well in my left. I've experienced moderate to severe pain every day since it started and limited movement as well as weakness. I have painful popping everytime I try to reach my arms out too. It gets so bad at times that I've lost feeling in some of my fingers and my hands have turned purple and blue. It has also created great pain ni my neck as well stirring up headaches and migraines that I've never experienced before this condition. I've been through physical therapy many times which has always left me in more pain than I started with. I've had 3 EMG's which I've been told are "conclusive". Also tested for MS & MD. Both negative. I've had cortizone injections for a while & was on the Fentynol patch. I've been through so many pain meds. and phyc. meds because I've been told it must be mostly in my head since they can't come up with a solution. I need to know is this surgery I've read about to decompress the nerve (if that's what's wrong) a permanent solution and if so are there ANY specialists in this field in the Philadelphia, PA. area?...PLEASE RESPOND!!

Thank you,
Sincerely, Desperate

[Wolfegirl]

Hi,
I too have had this problem for about 5 years although it really become a "pain" about 2 years ago and now chronic and daily for 6 months. I am currently working with Stanford Hospital in California. They are refering me to group of pain specialists that are supposed to identify the problem and "fix it"? Anyway, I will keep you posted. I am curious if you get any feedback on your surgery question. I currently receive botox injections in my muscles to relieve the pain and spasms. This has helped.
Lets keep in touch
wolfegirl

[Desperate_in_NJ]

After 4 years of medical testing, pain meds, consultations with specialists, I was recently told by a Doctor at Hospital for Special Surgery that this is a long thoracic nerve problem.  I also went through much pain meds, therapy , hopeless days and nights.  I feel totally devestated be the diagnosis.  I have seen so many top surgeons for the right shoulder pain, scapula winging, thoracic pain, TOs evals, MS evals and on and on.  I can't put any pressure on my upper back and have to sleep sitting up.  I heard of a Doctor in Texas that treats this disorder Dr. Nathan and he does outreach clinics around the country .  I will probably try him next.  I am so discouraged be reading about this problem- everyone's symptoms are the same as mine, loosing hand function, tingling and pain in two little fingers of right hand. Drop things all the time. I has open shoulder repair four years ago for a torn ligament.- problems got much worse after this.
Desperate in NJ

[kccolella]

I had this problem 16 years ago and went to see Dr Evan Flatow at Mt. Sinai in ny for a tendon transfer of the serratus muscle.  This is what you need - it solved my problem for 16 years, although just recently I sustained an injury & the scapula is winging again.  Don't go to doctors who aren't familiar with the condition (it's rare) because they only make it worse.  After reading your posts I realize I was extremely fortunate to find the right doctor.

[THN]

Only I have been chasing my tail on this one for far longer than anyone...And MDs were outright cowards with me I thought it was all in my head too!!
I have had winging scapula since 1995.. many MDs of all specialties mostly orthopeadics and nuerologist were clueless.. some said it's NOTHING, some said ah!! 15 years later "you are suffering from fading athelte syndrome!!- the more honest ones said "don't know what that scapular flailing was about!"

Disgusted I packed up and took a trip to Houston TX - from NYC... Dr. Nath
He was able to give a name to what I have suffered from as soon as took my short off!!
"you have winging scapula" he beamed !
I said "that was impossible... it's a very easy diagnosis to make and I have seen professors in highly reputable institutes in NYC for that past 15 years or so, and none were able to say winging scapula?... I'm highly doubtful" I said..

"let's confirm it with a EMG" Dr. Nath said, sent me the same day to a neurologist whom confirmed the diagnosis ! "CHRONIC LONG THORACIC PALSY!!"

I'm so happy now I know what have broken my neck and upper back literally for so many long years.. And will undergo a very simple less drastic "decompression procedure with Dr. Nath sometime Next month... However having had the winging for well over 15 years reduces my chances for simple nerve decompression and grafting success but still I have shot at it....
No tendin transfer no God awful scapulothoracic fusion etc of commonly accepted surgeries for this type of injury...

Dr. Nath Houston TX check him out..

Good Luck

[achilles2]

I am sorry about all your problems. My sister too was diagnosed with both winged scapula and long thoracic nerve palsy and she has been suffering since she fell in Dec 1994. She too saw many different specialists and some even thought that it was in her head. She finally found an excellent chiropractor who has helped her more than anyone else. Pain, tingling and numbness, improved greatly. All of her problems stemmed from a previously undiagnosed whiplash.

If you can you might want to try and find a good chiropractor.

good luck,
achilles2

[achilles2]

I also forgot to mention it was her fifth chiropractor that was able to treat her correctly. So if you have tried chiropractic care in the past do not give up. Not all chiropractors are alike.