United Brachial Plexus Network

Hi, and nice to meet you all! I am glad I have found this site, as I have always felt I am the only one with what I guess is LOBPI(?). All I ever knew was, when I was born I couldn't move my left arm until I was about 5 months old. Gotta an interesting story about that, but will tell later. When I was about 10, I noticed my left arm would not fully extend. Three years ago, at 25, I finally had the means to see a doctor about it. After the meetings with him, he told me I had what was probably Erb's Palsy. One surgery and $$$ worth of therapy later, still no straighter.

Well, I've always hated, and still do, what I have. But I guess there is worse. I am an accomplished and talented (so I'm told) drummer for many years now. And nobody ever notices. (I hide it well by putting my left hand in my pocket or holding my beer!!)

But, alas, I still yearn for a straight, "normal" arm. This site and message board seems very informative, and friendly, too! I hope to meet some of you and talk about ways to improve what we live with.

One thing I'd like to start with is: has anyone heard of Rolfing? (info can be found at www.rolf.org). A friend of mine, and massage therapist, suggested I look into it. But because it is not usually covered by insurance and is not a "traditional" practice, I thought I would ask you all. See if anybody has experience or knowledge of this. Wondering if I should try it....

I look forward to talking with you all!!
Tom Bacarella

Oops! Sorry 'bout the double post! Still new to this.

Tom

Tom,

Rolfing is a bit too strenuous (and you might even say that it is too risky) for your affected arm soft tissue and joints. I would highly recommend that you seek out a physical therapist that does myofascial release (MFR) and this way your insurance will cover some or all of the PT sessions. If you set up a program of active stretching, deeper stretching (myofascial release), regular massage and heat (whirlpool, etc.) you may be able to make some headway. But I would suggest you get to a bpi specialist because you have to figure out if there is anything that is biomechanical that's getting in the way (the way the bones themselves move). Also, check out Dr. Karen Pape's site www.tascnetwork.net. Dr. Pape may also have some helpful advice for you.

Hey! First of all it's pretty cool that you still became an accomplished drummer. I've always wanted to learn but was itimidated by it as i have OBPI in my right. I actually just recently found out the name of what i have at the the age of 18 and was suprised to find this kinda site. I totally understand what you said about hiding it by putting your hand in your pocket or whatever. People hardly notice anymore. I have never had any surgery to make any improvemments in my "crooked" arm but have been considering it lately and just wanted to know if it was beneficial to you at all? Anyways keep up the drumming!
Monica

Hi! I think we all have gotten VERY good at hiding it...I am finding that the hiding is now getting me in the end. It is great that you can drum though. That takes co-ordination I know I don't have in my BPI arm.

It is great to have you here:)

Dear Tom, I am the mother of a 21 year old LOBPI. She also has that Bend although not as bad as "L". For now she is not concerned with it. Her forearm is frozen in the neutral position and her hand hangs in ulnar deviation. She can open and close her hand. Here injury was severe (entire Left torso, shoulder, arm, hand, fingers), and any return was remarkable. So if someone would focus on it, it would be noticable. However, it does seem, most don't notice. Most remark more at how TALL she is, and what LONG legs she has. Womens 35" inseam are hard to find and VERY EXPENSIVE.

When I was in high school, a classmate of mine had his atrophied arm frozen in the "L" shape. He could only use his hand. After my daughter was born, I always wondered if he was BPI.

Last summer a small group of classmates got together, and I explained how I often thought of him, thinking he probably had the same injury as my daughter......NOT he had Polio (yeah I'm that old-born just before Polio Vacinations). And in fact, in order to make his hand more functional, it was decided that he would have a surgery to place his arm in the "L" position.

Just thought another perspective for thought might help. I know our society is so focused on appearances...and I don't want it to seem I don't understand.....I have a daughter with OBPI. I also have another daughter that did have surgery to correct a physical situation (deamed medically necessary and covered by insurance), and she was taunted in both Grade & High School, because of it. SADLY that non OBPI daughter suffered more TEASING than my BPI daughter.

Also I do not know anything about Rolfing. However I do agree with the GUEST post re MFR. I do know, and was trained for MFR Myofacial Release, to use on my OBPI daughter.....I have since used it on my other children for other situatuions as well.

Thanks Guest and AB for the insight on rolfing. I have never heard of it before the last couple of weeks. I will seriously do my studying before attempting it.
The surgery I did have was not successful at all. It DID manage to take some money from me and 4 small scars, but no straighter. But, I now wonder if the doctor really knew what to be working on. Though nobody else notices, I do. And that's what gets me the most, I guess. Like Kamren, hiding it is getting me too.
Thanks MonicaB. Drumming is really what I like to do most. Besides the "crookedness" of my arm, about the only other limitation I have is muscle growth. If I make a muscle in my right then left, it is REALLY noticeable. So, I can still manage to drum. The endurance in my left is not near like the right, but I managae I suppose. I'm sure everyone's is different, but if you can manage to hold drumsticks and move your wrists, I say "Go For It!!!" It really is a release!
Thanks everyone for listening, replying, and insight!!

Tom B.