unknown bpi

[lilringneck]

Hello all,

I am new to this board. I wanted to introduce my story and see if I need to cover more bases. I noticed muscle wasting of my right arm while I was in college. I am now a dentist. I am right handed and my wasting is on my right. My muscle wasting is along the posterior cord of the plexus. My deltoid is basically "gone". I can move my shoulder and have some contraction of my remaining fibers. Most of the muscles along the posterior cord have been affected. My bicep and tricep and fine, though, I have neuropathy pain in my tricep. I am 33 now and have been dealing with this since I was 26. The oddity of my injury is I really can't remember any type of trauma that would have caused this type of wasting. I first noticed it while playing a pick up basketball game where I threw the ball and had an "arm out of socket" feeling. But I know the wasting was there prior...It just occurred "painlessly" This is when I first noticed that something was wrong with my arm. I sought advice from the neurology department at UCLA. I've had several EMG's and a couple of MRI's(the MRI's were normal). The EMG's diagnosed the problem along the posterior cord. But the doctors were puzzled by the source of the problem. My first doctors thought I had Parsonage Turner's syndrome and that the symptoms were viral related and I should return. My other doctor's have said it is trauma related, but I again, I feel I would remember trauma or an injury that would cause this??? Here of late my pain is increasing and I am getting numbness in my ring and pinky finger. It is difficult with my profession, because I have fasiculations and shake due to fatigue. Pain in my right neck, trapezius area, has increased, and I feel that I am slowly worsening rather than staying stable.

I've felt like I've exhausted all options for treatment with the several doctor's I've seen over the years. After reading a lot of the posts it seems seeing a BPI specialist is warranted. Any thoughts would be appreciated.

All the best

[ptrefam]

I would see a BPI specialist even if it only eliminates this as a cause for your problems. A "traumatic" injury can be caused in ways that you may not remember. There are members here who have a TBPI from virus, surgery where the arm was left at the same angle for several hours, radiation, mamograms, sleeping, watching tv, ect. So not all of them are an accident where you would remember what happened. Sometimes it's as easy as scar tissue that has built up and blocking the signal. Being as your arm is deteriorating I would see the BP specialist as they may be able to give you more insight or hopefully a plan for treatment. There are very good dr's listed by hitting the "Resources" tab at the top of this page. Hope you can get some answers, we all know how frustrating it can be.
Sue

[lilringneck]

Thank you for your help and response.

[Wendy Lee]

I would seek out an upper extremity specialist, in the orthopedic arena for starters. I have somewhat the same sort of stuff going on from a car accident and when the arm got jammed it didn't seem at the time, that it was going to be such a terrible injury. I've gone through some real awful crap in the pain area, but the newest discovery is actual paralysis in the left arm. I think it is the radial nerve mostly. The humerus might be slipping out of the socket and so causing a nerve stretch, hence more pain and now numbness. This slipping might be what is causing the shoulder muscles to waste away.
Good luck to you, because doctors can just be such buttheads when they are clueless as to what's wrong. I would also suggest calling around to find a real good Athletic therapist, one who sees field injuries. Then get a script for them to do an evaluation. Many times the PT can discuss the injury with the doctor and find out exactly what's not working and what's is acting as a compensating muscle.

[Christopher]

lilringneck,

I've seen about every qualified neurologist in Los Angeles, and unfortunately this injury requires an experienced and talented specialist specifically focused in the field of BPI. There are so many variables to take into account and so many differences from case to case, that it makes it a very frustrating experience trying to find an adequate and accurate assessment of what actually has happened, is happening, and can be done. What options a BPI specialist will give your are equally varied.

After my release from the hospital (USC University after 1 months stay), I sought out as many secondary opinions as possible for surgical repair within L.A. (5 different neurologist), then S.F. & Stanford, then LSU, Harvard Med School, NYC Hospital for Special Surgery, Dartmouth Med School, and finally the Mayo Clinic in Rochester MN. I learned a lot along the way, which served it's purpose in making my final choice (Mayo Clinic). You use your hands and arms in your profession, so I wouldn't wait around, if I were you, to get proper assessment.

I would recommend either seeing Dr. Aaron Filler in Santa Monica (but he doesn't take insurance!), or flying out of state to Mayo Clinic in MN, Allan Belzberg at Johns Hopkins, Dr. Susan Mackinnon from Barnes-Jewish Hospital in St. Louis, Mo., or Dr. David Kline at LSU.

If you wait to long , if surgery is an option, muscle atrophy can be permanent.

I met a boy who had two Doctors for parents at the LAX Airport once, when I was flying out to the Mayo for a post surgical check up (where they were going as well), and it had been two years since his initial injury (complete paralysis). His parents made the sorry mistake of trusting the opinion of a fellow colleague neurosurgeon that it was just "best to wait and see". Wait and see two years after it is too late, his options being reduced down to a fraction of what he could of had before. It made me furious inside, I figured of all people, this 19 year old kid should have the best chance at getting the best help. That obviously wasn't the case, we are all susceptible to doubting our instincts and believing that those who specialize in something obviously know what they are talking about and know more than us.

Here's a few previous posts that might give you some insight...

http://ubpn.org/messageboard/thread ... 9&tstart=0

http://ubpn.org/messageboard/thread ... 7&tstart=0

U.K. BPI site:
http://p072.ezboard.com/fadultswithbrac ... =847.topic

What ever you choose, best of luck with it all!

Christopher


PS does your username; lilfingneck, refer to that type of waterfowl?
just curious...

[lilringneck]

Thank you all for your responses. The name comes from a burnt neck in the summer. Hope you're all well.