I can't believe I found ya'll!!

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
Dean-na
Posts: 352
Joined: Tue May 13, 2003 10:38 am

I can't believe I found ya'll!!

Post by Dean-na »

Hello! My name is Deanna & I live in Alabama. I am 31 & was born with Erb's. I was 10 pounds at birth. I got caught in the birth canal & the doctor pulled my right arm/shoulder...& you know the rest. I have limited use of it. The doctors stated I would never be able to use it, but my parents worked with me. I can't raise it to about my waist, have numbness, some parts are very tender, grip is weak, shoulder aches, my fingers do work, but are now starting to go numb. I just thank God that I have a arm. I am married & have 2 wonderful children. If it hadn't been for my mom I would have never made it this far.

The doctor that I went to at a early age has long retired & I have no idea who to go to know. I really need help.

It gives me such comfort to know there are others out there that have similar situations like mine. I really didn't think there were any. When I have went to bone doctors they would say, "Erb's Palsy?"

Does any one have any encouraging words to a 31 year old?

Thanks!!

Deanna
JaimeC
Posts: 305
Joined: Mon Jul 22, 2002 11:55 am

Re: I can't believe I found ya'll!!

Post by JaimeC »

Deanna,
I know some adults will answer this, but for now, go to www.texaschildrenshospital.org, click on Patient Care Centers, then click on Brachial Plexus Center. You will read a lot of interesting information on the injury. Dr. Rahul Nath of TCH has done surgeries on a few adults for this. I think it's never too late! You could give them BP center a call and they'd be happy to talk with you! I'm sure there are other centers around the states who deal with this in adults, but I don't know which ones (someone will). It is a "pediatric" injury (y'all know what I mean?) and the pediatric docs - specialists - know how to deal with it. Good luck!! So glad you found the web site.
Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

Re: I can't believe I found ya'll!!

Post by Judy-T »

Welcome to the board Deanna. I am 42 robpi. I know exactly how you felt when you found this site, because I felt the same way. My fingers started going numb also and I had surgery about two years ago to help. They cleaned the scar tissue off of the ulnar nerve and moved it.(ulnar nerve transposition) It was so nice to meet a doctor that understood what I feel. I am talking about Dr.Nath. He is at Houston TCH.There is also a list of doctors on this board that specialize in this area.Feel free to ask any questions here. My encouraging words and advice to you are that you are not alone,there is help out there,and do not overuse your good arm. Many of us are suffering from overuse of the good arm. Feel free to e-mail me if you have any questions.
Stephanie
Posts: 72
Joined: Sun Nov 04, 2001 10:20 pm

Re: I can't believe I found ya'll!!

Post by Stephanie »

Hi Deanna!

I'm 52 years old, and have a left OBPI.
I was also 10 pounds at birth. My mother had gestational diabetes and later adult onset diabetes.
I'm sure this was the reason why I was so large at birth.
As for the OBPI, I can only raise my arm as high as my chest, I have allot of strength to carry things in this arm, but poor manual dexterity. I cannot really use my fingers for anything more than a basic grip. No typing...that's for sure!
I am also married with two sons and have worked for the Camden County Library system for 28 years.
Last year, I was able to meet with other adults and children with OBPI's. Finding this website has been very informative as well as "healing" for me.

Welcome!
-Stephanie
Kathleen M

Re: I can't believe I found ya'll!!

Post by Kathleen M »

Hi Deanna

I am Kath right obpi and just like you I thought I was the only one with this injury. But it took me 60 years to find others with this injury... LOL... I am married and have three children and four grandchildren. I was lucky enough to meet with a few of the other OBPI who post to this board over the last few years and it is so much fun to talk and be with others who truly understand...

I met Steph and Judy and Nancy... and then some of the other obpi are my e-mail friends and I don't have to explain why something frustrates me anymore they understand.

I am going to camp in August and look forward to seeing the other adult/obpi who are going...

You have two kids they will enjoy the activities...

Judy is your whole family coming? I am looking forward to seeing you again.

Welcome to the boards and if you have any questions ask away... I am sure you have lots...

Here is the link for Camp

http://ubpn.org/campannounce.html

Contact nancy@ubpn.org give her your name and address and she will mail you Outreach.


Kath
njbirk
Posts: 1806
Joined: Wed Oct 24, 2001 10:09 pm

Re: I can't believe I found ya'll!!

Post by njbirk »

Hi Deanna,

Glad you found us!
I also got your email and will be adding you to our mailing list and sending out the last Outreach issue to you which has all the info on camp, as you requested.

Their is a medical resource directory on this site at:
ubpn.org/medicalresources/

It is arranged geographically and includes not only contact information but questionnaire responses from many of the docs participating.

Once again, welcome!

Nancy Birk
UBPN President
Tina
Posts: 42
Joined: Sun Sep 15, 2002 5:15 pm

Re: I can't believe I found ya'll!!

Post by Tina »

Happy Mothers Day Deanna, and WELCOME !!!

I live in Michigan am 46 1/2 and was born with Bilateral Erbs's. I was under 4 pounds at birth and like you if not for my parents working with me, I might not have been as well off as I am (limited.....but well off) :)

Also like you, until I found this place a few years ago I always thought I was the only one....and alone. Little did I know that I would not only find a wealth of information, but the unconditional love of some of the best people I have ever met in my life................... welcome aboard
sleepless_In_Ohio
Posts: 3
Joined: Tue May 13, 2003 8:09 pm

Welcome Deanna!

Post by sleepless_In_Ohio »

I am 35 years old with an OBPI in my left arm. Thank God I am right handed. I have limited use in my effected arm. Its numb, I can lift it about to my shoulder, bent at the arm, but I have pretty good use of my fingers. I am married with 2 boys...17 & 10

I work as a process engineer for a Japanese automaker.

Enough about me....Glad to see you found this web-site. It was a life saver for me.
I am also trying to find a doctor in my area to perform bicep engthening for me as well as address some issues I am now having in my good arm. My internal doctor referred me to an orthopedic doctor and I truly hope he will be able to help me.

I attended one of the picnic's last summer and it was great. Dr. Nath looked at my arm and said he could perform a bicep lengthening procedure that would unlock my elbow. The problem is I don't have the money to go to Texas for the procedure and I don't know if my insurance will cover it.

Let me know if I can help out in any way

Katrina
Dean-na
Posts: 352
Joined: Tue May 13, 2003 10:38 am

Re: I can't believe I found ya'll!!

Post by Dean-na »

I wanted to thank you all for responding to my email. Please keep writing to me. I find all this so amazing, since I am so shocked there are more of OBPI'S out there. I have told my mom & she is shocked too. I have cried & it feels good. My husband thinks I have went off the deep end. (just kidding) I have also read that some of you have burned your hands & didn't know it. I also did that when I was younger on a stove. My sister looked & my hand was on the burner. I have also cut my self w/a knife & not known it. If there is anything I can ever do for anyone, please let me know.

Thanks again,

Deanna (B'ham,Alabama)
jep98056
Posts: 322
Joined: Sun Apr 14, 2002 10:25 pm

Re: I can't believe I found ya'll!!

Post by jep98056 »

Deanna:
Welcome to the forums. I'm a 63 year old ROBPI victim (Kathleen likes to remind me that I'm the senior member of the forums so far). I found this site about a year ago searching for information. I think you'll find the contributions informative and helpful. Most of all, as you've already discovered, you are not alone with this injury.

John P.
Locked