Adult OBPI info?

[CharlesLouis]

Hey, I'm new to the board and I have a lot of questions. If someone has a good site with information about treatment options for adult OBPI (frankly I always just thought it was only called Erb's Palsy until a few days ago.) My mother never said anything about options and I didn't know anything about corrective surgery at all until a week ago. If anyone could help me out I'd really appreciate it.

Thanks,
Charles, 21yo ROBPI

[marieke]

You have a few options, tendon transfers, muscle work.. Amy, should be able to fill you in a little more as she has just had another surgery (she's 20).

I had a tendon transfer at age 14 when before we were told there was nothing that could eb done either. I'm 31 now. It helped me gain external rotation and let my ram hang more naturaly.

It depends on what your deficits are, what movement you have, what you would want...

Marieke (31, LOBPI)

[CharlesLouis]

Great thanks for the info - I'd love to talk to Amy if she'd leave a reply too. Does anyone know about what year the surgery started becoming used for infants? I'm curious if this is another one of those things that my mother intentionally "forgot" about or not - she was always thrilled about my OBPI because it kept me out of sports and the military and things like that. I tried all kinds of google searches to find that information, but no dice.

Oh and I have pretty good movement in my right arm. Kind of like the policeman they featured in the last outreach (I read it online). I have small impairments in the rotation at the shoulder, and pretty major ones at the elbow - and all of the muscles are "built" wrong - it looks like my right arm is really muscular because of the deformation.

It's just bad enough to keep me from doing pushups, pullups, playing sports, and braiding my own hair (possibly the most annoying).


Message was edited by: CharlesLouis

[hope16_05]

Hi Charles, I am Amy the 20 year old Marieke mentioned.
the nerve grafting surgery relatively new, the olderst case I have heard of is a 14 year old had it as an infant. I dont think its one of those forgotten things. I have learned that our parents will do anything for us to help make our injuries better. Like Marieke said, I just had another surgery about 10 weeks ago (May 30th) this one was a tendon transfer to stabalize my scapula(shoulder blade). So far it has worked wonders in that I am no longer in pain and I am using less compensatory movements. Although my arm is still very weak it is getting better all the time.

I do want you to know that you can still play sports! my injury limits a lot of things but if there is a will, then there is a way! I play softball and have since I was a third grader, I am now starting my junior year of college. I catch and throw with my left hand as it is my right arm that I have the injury to. I also bat left handed. It does take some practice but I am so fast at it now that it takes people a very long time to even notice that I am doing something different from the norm. I have also played basketball and when I was younger flag football, as tackle football was not allowed for elementary kids. So there are planty of sports you just hasve to figure out your own way of doing things! If you need some tips, feel free to ask me. I have been researching bpi's since I was about 14, I think I started at 13 but really got into it at age 14. Now at 20 I enjoy helping others to learn about bpi's and also learning more myself.

Have you tried therapy for your elbow? I had a pretty bad contracture and have been able to get that almost taken care of my wearing a splint to bed at night. I just got mine adjusted today actually.

for more info feel free to check out my web site but for now I have to run, lots to do! www.freewebs.com/bpimn

Hope this helps and that you post more often!
Hugs,
Amy 20 years old ROBPI from MN

[marieke]

Amy's right about the sports thing... there is no reason why you can't play sports, maybe tackle football is out, but baseball or soccer or swimming, cycling, even apick up game of hockey (not the smash into the boards thing), basketball...

I was never really into team sports, but used to like playing basketball with friends even though I have no overhead with my left arm, I swam, I figure skated, cycled..

Nerve grafting is "faily" new, so maybe wasn't an option 20 yrs ago, or wasn't done as much back then so unless you were with the right doctor there would be no way to know about it. Muscle and tendon transfers/release can still be done now, though rehabing will take a LOT more work and determination as being an adult means the body has gotten used to doing thinsg ONE way. Learning how to NOT compensate means UN- LEARNING bad habits. But being an adult also means that it is your choice and you don't need to be cajolled into doing PT/OT to re-hab, and you can understand what is being asked of you...

Take a look at the medical resource page and see if any doctors there are near you or if you can email/call them and see if you can at least be evaluated to see what could be done and what would be worth doing...

Good Luck!
Marieke (31, LOBPI)
http://nurse-to-be08.blogspot.com

[CharlesLouis]

I should rephrase something I said: It's not that I *can't* play sports — it's that a combination of my mother keeping me out of them in my childhood years and the injury preventing me from getting good at a high speed kept me from progressing.

I didn't exactly have a whole lot of personal willpower either - when one year of giving it my all didn't get me past third string, I got sick of football and quit. So I shouldn't blame all of that on my injury.

But I never had any luck with throwing balls of any kind. No matter how hard I practice with my left arm, it doesn't seem to help my aim. It took me years of consistent practice to build up enough motor skill to improve my handwriting and draw decently well.

My comments about how it has affected my sports ability may have been more me scapegoating my problems onto my arm than factual cause, I honestly can't say. But I know that I've always had much more trouble building up muscle in my arms than other men of similar build.

As to swimming - well I doubt it's caused by the injury, but I sink like a stone. Always have : D

Does someone know how American medical insurance handles the reparative surgery? I've been on long enough to waive pre-existing so that's not a worry.

[hope16_05]

Charles,
this injury takes a lot of willpower. I just had my 5th bpi surgery and the therapy after has been butt kicking but I am ready for it at 20 years old. If I would have had this surgery even at 15 years old I so would not have made the progress that I have so far. If you are serious about looking into surgery you will have to find all the willpower you have saved up from not playing sports and send it towards your recovery.

Start saying to your self every day, several times if you need to "I can do anything I want to!" When you have that mind set then you really will be able to do anything you want to!

I would suggest talking to your regular doc or checking out the med resource page that marieke suggested to find a bpi doc and see if you can get a refferal to therapy. You might make enough progress with just therapy and not even need surgery! that would be awesome and save you a lot of time and energy and possibly pain.

Sorry I cant help you with your insurance question but maybe give the insurance company a call and they might be of some help.
Good luck! I am here if you want some tips for sports if you are still into them!
Have you checked into camp (check the home page if you havent) I think you would really enjoy going to camp and meeting others with this injury. This years its in Auburn, Washington.

Hugs,
Amy 20 years old ROBPI from MN

[CharlesLouis]

I know I can do anything I want mentally - I always have known that. I just gave up so long ago on the physical aspect.
I will try to find a bpi doc, but it will probably be a long time before I can get to see one, much less afford to go to therapy. Unless the insurance will cover it (somehow I doubt since they refuse to cover almost anything for my wife's diabetes X-[ ).
I don't think therapy will be enough for me though - when I was young, there was a small stint of physical therapy I did, and it didn't do much. That being said, it was such a short period of time I doubt it had a chance to work.
I've tried myself though - massaging my arm, trying to stretch it out, trying to get other people to straighten it out for me, and I've never seen any improvement. I can build muscle tone and general strength, but I can never improve flexibility - and that's what bothers me, which is why I want the surgery - even if the therapy could improve it, I want it as close to perfect as possible (i.e. - first surgery, followed by intensive amounts of therapy until me and my wife know how to take care of it by ourselves).

All of this being said, though, I won't be expecting to start any of this anytiem soon - we have a baby due in October, and money is incredibly tight (we're already considering bankruptcy), so I can't afford to add any more extraneous medical bills onto all that.

Same goes for going to camp =( There's no way I could afford to go. I can't even afford to miss the work that would require. I'd love to meet other people with OBPI, so I'm sorry I'll miss out on that opportunity =(.

Hugs back,
Charles, 21-year-old ROBPI, AR

PS - It's not that I don't have ANY willpower - I have much more than I used to. In my senior year, I was enlisted in the Guard - I never went to BASIC, but in that year I was able to go from the most out of shape guy in the unit to being able to beat the standards for graduating from BASIC training in everything but pushups (obviously). And it was the pushups that kept me from being able to go to BASIC X-[. That's probably the most obvious way the injury has affected me. My mother was so thrilled at that >.>


Message was edited by: CharlesLouis

[susancharley]

I'm 64 with OBPI and have never had surgery. My shoulder is rounded, have some scapula "wing" if I'm careless about my posture and contracture at the elbow and very limited rotation. I have managed to become an ACE certified personal trainer and yoga instructor. My students know to look at the "good" arm for their model. I have an appointment with an orthopedic surgeon who specializes in Adult OBPI in a couple of weeks at UAB's Kirkland Clinic. I need to know if what I am doing for myself to strengthen is causing more pain than gain. I have almost constant pain in the shoulder radiating into the back of my neck and would love input on whether strengthening the posterior deltoid and trapezious is helpful. I also was never told anything as a child - never even heard the word's erb's palsy until I was 60! Just thought I was "injured".
Susan (Huntsville, AL)