United Brachial Plexus Network, Inc. • New to the forum
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New to the forum

Posted: Mon Apr 26, 2004 4:38 pm
by shan2321
Hi everyone, I'm 22 and have had erbs palsy since birth. I never even thought of a forum and all for this until today at work (I work at an insurance call center) I got a call from Texas Children's Hospital. The guy was trying to get an authorization for the surgery for erbs and I about flipped when I heard "erbs palsy" I have never heard anyone else talk about the condition except for my parents. He gave me this website address and I found this forum! I'm going to look into the surgery thing, but not sure how much good it will do me... Through therapy when I was younger, I started from no use of my arm to about 70% usage. Not really sure what my percentage is now, but oh well.. lol

With everyone else that has this... is one of your arms shorter than the other?

I read the washing hair topic, and I just prop my arm on the wall of the shower and do use both hands, just my left arm gets really tired after a VERY short time and then back to the good arm :-)

I'll be posting later!!

Shannon

Re: New to the forum

Posted: Mon Apr 26, 2004 5:04 pm
by momma-1
HI SHANNON,
WELCOME, I HAVE NOT BEEN HERE LONG EITHER,AND I AM 34 WITH ERBS PALSY SINCE BIRTH,NEVER KNEW ANYONE ELSE EXISTED WITH THIS.LIKE YOU SAID ONLY TALKED ABOUT IT WITH MY PARENTS AND SIBLINGS THAT IS IT. I WAS ALSO THINKING ABOUT THE SURGERY BUT IT IS A LITTLE FAR FOR ME AND I HAVE A 5 AND 6 YEAR OLD SO I MAY HAVE TO WAIT A WHILE.

AND YES MY ERBS PALSY ARM IS ALOT SHORTER THAN MY GOOD ARM. I DON`T WEAR ANYHTING LONG SLEEVE BECAUSE OF THAT.

ITS GREAT TO KNOW YOU, TALK LATER HAVE A GREAT DAY
CONNIE

Re: New to the forum

Posted: Mon Apr 26, 2004 5:56 pm
by njbirk
Shannon,
That is an amazing coincidence.
We are so glad you found us!

If you will send me (nancy@ubpn.org) your mailing address, I will add you to UBPN's mailing list and send you some back issues of our magazine Outreach. There is no cost for Outreach.

I am 50 years old, Left OBPI. I hope you find UBPN to be helpful to you as you seek more information about your injury. And these boards are a great source of support.

Nancy Birk
UBPN President

Re: New to the forum

Posted: Mon Apr 26, 2004 6:54 pm
by rachelcasa
Welcome to the boards Shannon!! Isn't it wonderful to find this forum?? I am 32 years old with it in my left arm. My arm was 3 inches shorter and now after surgery its about an inch shorter. I have a lot more movement now since my surgery. I had it in TX as well with Dr. Nath. I wish you luck and let us know if we can help you out any.

Re: New to the forum

Posted: Mon Apr 26, 2004 7:09 pm
by Susana
I am glad you found this . My husband found it for me when I had my accident last year which left with a paralyzed arm. This week if you continue reading you will find how helpful this site is.

Re: New to the forum

Posted: Mon Apr 26, 2004 7:39 pm
by jep98056
Shannon:
I'm almost 65 years old and Right OBPI. I think that you'll find the UBPN web site and forums very useful to learn more about erbs. I found UBPN about 3 years ago and it's been beneficial to me.

John P.

Re: New to the forum

Posted: Tue Apr 27, 2004 9:07 am
by Judy-T
Welcome to the boards . Feel free to ask us any questions. Yes, my arm is shorter.

Re: New to the forum

Posted: Tue May 04, 2004 2:52 pm
by Brandy524
Hi Shannon,
Welcome. I just found this board a few weeks ago. I didn't even know there was a name for this before then. I'm 23 and have had it since birth as well, in my left arm. My left arm is shorter because I have a contracture at the elbow (not sure of the degree of the bend though). It was great to find all these other people with the same problems.
Brandy

Re: New to the forum

Posted: Wed May 05, 2004 5:37 am
by kamren
Welcome!!! What a coincidnece!!!!

Yes, my left arm is shorter than the right.

Re: New to the forum

Posted: Fri May 07, 2004 2:33 pm
by SwtBrooke
I, too, just found this Forum last nite and wept because I have never met or talked to anyone else with this birth injury. Yesterday, I somehow injured this arm and have been in such excruciating pain I barely know what to do. I called my internist and left a message and also Emailed Dr. Nath !! Dr. Nath has already replied to me and I've yet to hear from my DR who just like all my other DR for the last 50 yrs have never addressed my problem at all.

I wept when I saw the baby pictures and read the letters from parents with babies with BPI. Brought back more painful memories of my exclusion from so much as a child.

It is not clear to me if something can be done to help me at my age (52) or if I will have more problems as I age. But here I sit struggling with pain just typing this, unable to dress today, or do my hair. Any help from anyone will be much appreciated and my Email address is SwtBrooke@aol.com Thank you and hope all are having a good day.