United Brachial Plexus Network, Inc.

I have had Erb's Palsy from birth - almost 47 years now. My left arm was significantly injured during child birth. My shoulder has not developed correctly - it is only extended a few inches from my neck. My elbow does not fully extend straight. And my wrist does not have the correct range of motion. I cannot lift my arm above my head. This hasn't stopped me from doing the things I have wanted to do in my life. I played sports as a kid... in fact I excelled. I know that my injury was a motivation to not only do as well as other kids but to do even better. Emotionally I have coped. I do think that I have some repressed feelings though. Thus this is why I am here I guess. This is a great forum to share my experience and to hear how others have navigated through their own journey. I look forward to opening up and helping others and to take away some motivation and inspiration myself. Thanks in advance for letting me contribute and take some gifts away!
- John

Welcome John to the UBPN Family. I hope you come back often. We learn soooo much from one another. Did you see the post about a Mayo Study on OBPI adults? We all need to support this because there are alot of medical issues as we age.
Carolyn J
LOBPI/ 73 & still learning stuff

Welcome John!

You have quite a journey of discovery ahead of you. I've been around her so long but when I first found UBPN there were only 4 adult obpi. I was sure that this was a rare injury and I was part of a rare group. Sorry be we are not as rare as most of us thought we were.

It's important to study your own injury and learn as much as you can about it. We all have different range of motion etc. BPI injury is almost like a finger print, we all heal differently and giving us some of that same issues and some unusual ones.

As as many questions as you would like. We all had so many questions and by comparing our issues we discovered many things we had in common that were due to bpi issues.
Like holding things in our hands and looking for them.
What may seem like a foolish/silly question really has helped everyone to understand it was not just their issue... but a bpi issue.

Thanks Kath! My first question would be if the development of my shoulder is common among OBPI. From the photos I have seen I think it's not very common. I know the length of the effected arm is often shorter and mine certainly is but the size of the shoulder I am not so sure about. My effected shoulder is significantly smaller than my other shoulder. I am fortunate in that I am not in pain. Never have been. I really feel for those who are! Is shoulder size/development a common issue? I could post a photo somewhere on this site I guess if that helps
Thanks!
- John

John
As smaller should is probably more noticeable on a man. Yes, it is common and many people complain about the difference. I don't know if it is because of the position our shoulders are in. Many have scapular winging. I was not even aware of that until I saw a photo of me taken from the back on the beach. I was about 20 then and was so annoyed when I noticed it.

A lot of our physical healing is different, depending on the degree of the injury and the nerves involved. I found ubpn when it was only 6 months old and assumed I had a mild injury. That is not true but glad that is what I thought for most of my life. My arm will hang straight down but my shoulder moves my arm. I can't supinate nor can I touch my face without a trumpet motion. But if I'm standing in front of you ... you would think I had nothing wrong. I have a 3-1/2" difference between my arms.

Welcome to the boards John! And welcome to the club that we did not ask to join! My shoulder is smaller too. I think like Kath said, it is probably more noticable in the males. Where are you located. I hope that you can help with the study that the Mayo is conducting. This is a First! To my knowledge,The adult population has never been studied .
If you have any questions ask away. When I found other people injured like me it was an eye opening experience. Just knowing that you are not alone in this and that others are out there and can give you advice is a good feeling.

Judy (50 ROBPI)

Hi John and welcome to UBPN. It was unbelievable to me when I first got involved with the UBPN boards how much I felt like instant family with everyone else here! I know you will find the same!

It sounds like we have very similar injuries. My greatest issue is my shoulder. I don't think mine is significantly smaller that the other, but my effected arm slopes at the joint where the arm and shoulder meet and doesn't "square" like the other one. Yet it "hikes" quite a bit closer to the neck. That hike causes my spine to be out of line, significantly out of line. Hello uncorrectable scoliosis! (Chances are you have scoliosis too, just never diagnosed. Mine wasn't until I was 40! Until then it was just because of my "crippled arm." I said something about that to Dr. Nath and called it "secondary scoliosis." He said "There's no secondary to it; you have scoliosis, there's just not anything that can be done for it.")

I have the same "locked" elbow too although I can't for the life of me remember the medical term right at the moment! Overdevelopment of the bicep muscle happens because there is no tricep muscle development to counterbalance it. The bicep allows us to bend the elbow, the tricep allows us to straighten it. So when one is developed more that the other, that's the only function we can do with it! I've had some therapy on that bicep and although I'll never be able to straighten my elbow, my arm does "hang" more naturally.

I also have the lack of range of motion in the wrist. Overall though, I have better use of that arm and hand than many with an OBPI have. I bet that you do too. Especially if you excelled in sports when you were a kid.

I've never had pain with my affected shoulder either but I've had a lot with my other shoulder. It's caused by overworking that shoulder to make up for not being able to use both fully. So baby your "good" shoulder and also, be careful with your back.

OK, enough unsolicited advice! Welcome! If I can help you on your journey in anyway, please do not hesitate to contact me! You can do it via email if you don't want to poat it on the board. (Lockridge_Lisa@yahoo.com) And COME TO CAMP! It is an awesome experience that will change you in ways you can't imagine! Plus you don't want to miss the adult OPBI only room party that my husband and I will be throwing!

Hello John & Lisa,
I hope you both contact Judy and participate in this Adult OBPI Study by Dr. E at Mayo. BTW, Dr. E is a Shoulder Specialist.
Carolyn J
LOBPI/73

Already have! But I'm not too optomistic about anything being done for my shoulder. It has grown "deformed," so I kind of doubt much can be done.

,Lisa
HUgs,
Carolyn J