United Brachial Plexus Network, Inc.

my name is charlotte.
i have t.o.s. and b.p. i was misdiagnosed when first injured in 95,in 97 a doctor started testing me for this infair disease.
in 2001 i found a man who gave me back my hands,
my arms my hopes and dreams.
my physical theropist robert frank.dayton,ohio.
it was the beginning of a wonderful dream,until i fell and broke my back.this disease has caused me to be a faller,i walking time bomb.now i am starting over but i am full of confidence in my theropist,if s.s. or workers comp would of helpped me when i asked all those years ago,i wouldnt be the way i am today.
yes it is important to have all records,but it is also important to go over all records with your doctor befor they send them in.
i wish you all the best

BrianD, I love how you say sense of humor is a major side effect ob bpi. It's true!! My son is only 8 but he has the best sense of humor. Always has, but I think it does give him a different view of things.
Thanks!
Jaime

My daughter has BPI injury.
She has Erbs Palsy C-5, C-6. Haley is now 10 years old.
Maybe we can make a name for BPI and make our goverment pay attention.
Kimmie

Time to move this up for some of our New folks...
Welcome to the message boards
Kath

bump up for new folks

I'm a little late to post to this topic but here I go, I'm a left OBPI. I'm 22yrs old and about to get my Master's degree in Sport Administration. Yeah! I have pretty good movement of my arm, but can't extend it upward and my ring and pinky fingers are just about useless..lol My wrist curves my hand outward, does anyone elses do that? Arm is probably 2-3 inches shorter than my good arm, and smaller overall too. I also have little sensation in my hand, better than it was growing up.. as I used my hand as a teething ring...lol I guess I was a cannibal then too... my mom about wrecked the ar she said when she looked at me in my car seat and i was knawing on my finger...lol got a nice scar still from that. The worst thing about the injury are the pain I get and how the arm always seems to get in the way.. especially when i sleep. Since my arm won't go straight i can't lay it by my side... usually ends up hitting my husband in the face..lol
It also seems that because of this ome of my bones in my hand are formed differently than my good hand. The joint next to the fingernail on my thumb i can hardly bend it. Not because of movement issues.. it just won't go! Also not a big fan of the slumping shoulder.. I have naturally broad shoulders so it looks weird, at least I think it looks weird. Anyhoo,
It's nice to know that there are all these people going through the same thing as me with this... just wish I would have found this board sooner!!!

Shannon

Hi everyone. I'm Tanya and I'm the mother of Amber (RBPI). She is 18 months old now. This was from a birth injury from you guessed it...delivering her on my back! Pass it on that this is the toughest way to deliver and the most likely to ensure shoulder dystocia resulting in BPI! I just went to the Shriner's Philadelphia Seminar on May 1st and got a lot of useful information. I also met some wonderful people (Lisa and Stephanie...you know who you are). My daughter gets OT 1/wk, PT 1/month, and aquatics 2/wk. We've not had any surgery, and so far have been thankful for that. I thought I was up to date on all the BPI information, but I'd highly recommend going to a seminar near you to get infomration and network with others. It was so much useful info! Thank you! I welcome talking w/ other BPI individuals or their parents anytime.

Tanya in NY

HI EVERYONE,
I AM NEW AND HAVE POSTED A FEW TIMES ON HERE.
MY NAME IS CONNIE AND I HAVE HAD ERBS PALSY IN THE RIGHT ARM SINCE BIRTH.I AM 33 AND TILL NOW I THOUGHT I WAS ALONE JUST LIKE ALL OF YOU,I HAVE A VERY UNDERSTANDING,CARING AND LOVING HUSBAND WHO ENCOURAGES ME ALL THE WAY.I HAVE TWO BEAUTIFUL KIDS,I AM A STAY AT HOME MOM BEACAUSE I CAN NOT DO THE THINGS MOST PEOPLE CAN DO I DO NOT HAVE AN EDUCATION HIGHER THAN HIGH SCHOOL.I AM STILL LEARNING ALOT ABOUT MY ERBS PALSY,IN THE MIDDLE OF GETTING DISSABILITY.I CANT LIFT MY ARM MAYBE A QUARTER OF THE WAY UP,CANNOT TURN MY WRIST OVER,MY ARM IS 4-6 INCHES SHORTER THAN MY LEFT,OVERUSE OF MY LEFT HAND HAS CAUSED CORPRAL TUNNEL TWICE,I HAVE ALOT OF MUSCLE SPASMS.MY ARM IS ALSO BENT IN.I HAVE NEVER FOUND A DOCTOR IN MISSOURI WHO KNOWS WHAT IT IS OR WANTS TO DO ANYHTING ABOUT IT,IT IS VERY FRUSTRATING TRYING TO GET HELP OR ANSWERS TO QUESTIONS AND NOBODY WANTS TO HELP YOU.MY DAD WAS GREAT WHEN I WAS SMALL HE DID MY THERAPY WITH ME AND HE IS THE ONLY ONE WHO COULD HELP ME.I NOW HAVE ALMOST NO ROM.
IF ANY ONE HAS ANY INFO ON DOCTORS WHO CAN HELP AROUND CAPE GIRARDEAU MISSOURI I WOULD APPRECIATE IT OR IF ANYONE IS FROM AROUND HERE AND JUST WANTS TO TALK I AM HERE FOR THAT TO.


WELL SORRY TO BORE YOU ALL,
THANKS FOR LISTENING I HAVE LEARNED SO MUCH FROM EVERYONE, THANK YOU, THANK YOU, THANK YOU.

CONNIE

Hi everyone, I'll re-introduce myself,new to this forum 1 month ago. I will be 66 soon,leftsided obpi and learned a name for what we have only 3 yrs ago. I really appreciate everyone's sharing and questions as I am a baby in learning about this, as well as a new computer user. Thank you one and all.
Carolyn J
Tacoma WA

Hi. Try the Shriner's Hospitals. There's many around the USA and they can assist with transportation. Good luck!