United Brachial Plexus Network, Inc.

Shriners Hospitals only offers services for children. Unfortunately, for us 'older' bpi'ers, we are beyond that age!

Nancy Birk
UBPN President

Hi momma-1....I think we all know that pain of not even being able to find a Dr who even has a CLUE what BPI or Erb's is. Amazing since it is really relativly common.

Your movement sounds alot like mine...very limited. Dr Shenaq, here in Houston, did a mod-pod on me 2 weeks ago. already I can rotate my hand about 1/2 way over, and lift my arm shoulder height. I can hardly wait to see what kind of movement I will be getting with PT.

I really don't know about Drs in your state...but I sure hope you can find someone there or nearby.

To the top of the page for the new folks

Thank God for all of you and for Kathleen who has been so kind to respond to my Emails. As I read many of your replies, many years of pain came flooding back. All the pictures of me as a baby show me unhappy or crying. My right arm pulled into my chest with hand dangling. Then at three and yes, I do remember this clearly, my parents took me to an Oral Roberts tent revival to be "healed". Words do not express the fear and terror I felt hearing him shout and put his big hand on my head and screaming "HEAL HEAL this child".

Well, the years that followed made me a solitary child escaping to the world of books since I couldn't play any sports with the other kids or take PE. The other kids only knew "something was wrong with her", but they couldn't really see anything dramatically wrong with me since I made every effort to conceal the sloped shoulder with shoulder pads, and always had something in my hand to camoflauge the fact that it was three inches shorter than my left. But I heard the snickers about how the back of my hair was never brushed well and that I was wierd.

Ah well, here I am all these years later and just called to cancel my weekly manicure appointments with a lady who despite the fact that she claimed to be my friend, criticized my hair at least every other time and would twist my arm trying to polish my thumb OR would actually shake my arm and tell me to relax. No more -- no more. I'm tired of explaining this problem I have and getting little or no help, consideration, or compassion.

Thank you all for being here to give me information and solace. I was a medical scientist for goodness sake -- for 26 yrs !! Worked at a microscope long long hours, focusing with my right arm and enduring hours of pain, followed my spasms that were so strong I would have to restrain my arm. Gave that up years ago after a botched total hip replacement at age 41, that left me paralyzed for a year. Severe toxic hyperthyroidism followed the year after that.

Have any of you had this surgery that Dr Nath performs ? And at age 52, what things can I do to relieve pain. I'm still searching for a DR in the Tucson area who specializes or at least has a working knowledge of OBPI. Thank you all again for sharing--- you have truly changed my life !!!!

Sharon

Hello Sharon,
I am 66 yrs old and have LOBPI and had alot of the same experiences growing up only emotionally absolutely no support and subsequently "stuffed" my tears and emotions which bounced up at me later as I was entering menopause. It was a big collision and I finally got help I needed. I got information here on UBPN that validated everything for me . This is a life long care process, so I read all the medical resource stuff on the Awareness link pertaining to adults with OBPI. Most of us haven't recieved any interventions,few if any, consequently have or will have pain issues.
My experience is: My left hand has alot of pain because of a tight "claw-like" contraction so I had a PT evaluation and recommended holding something soft in that hand so that it doesn't/won't close completely; I tried a rolled up 3 sock thingy but then tried a soft pliable stress ball that i saw at the drug store(a rubber ball was too hard when "the Hand" clamped down on it).Anyway..now I use the plastic stress ball and at my age people just assume I've had a stroke and don't make comments anymore. For shoulder pain I started a pool ,warm water, gentle movement and taught myself to gently dog paddle/crawl and it has helped this alot. I plan to try a gentle massage too, but I always end up using that money for something else....
Sorry to ramble..but I found alot of helpful information on theses forum boards. Please feel free to ask questions.
Carolyn J

Carolyn,

PLEASE ramble away! We greatly appreciate your input and are so happy to have you around here. Thanks for sharing!

time to move up again

Hello my name is Tracie Frain.I wasnt born with the injury but was hit by a drunk driver when I was 10 months old.I was only fortunate enough to just have a damaged left arm,and still have my life.It has made me a very strong person trying to live with intence pain and never really knowing why.I actually just found out a week back what I actualy had in the left arm,all my life I just thought I was deformed,and had a horrible fear it would happen to my children.
This board has been a wonderful place,and I visit here everyday to gather information to start my journey of hoepfully getting this pain to end.I love to laugh and have a good time,and from what I see here so do many others.Thanks everyone for answering any questions,and just being there for all of us who have no idea what direction we need to be going:)

Welcome Tracie

I wonder if you have faced some of the same growth issues that those of us who were birth injured faced. I am sure you faced many of the same emotional and physicial difficulties... glad you found us. If you have any questions feel free to e-mail me or please post them to this board and someone will help you

KathM@ubpn.org

I'm just in awe at the moment. I still can't get over the fact there are other people like me.

My name is Christy and I'm 30 and have Erb's Palsy in my left arm (sorry I have to get used to the other name). My mother was a gestational Diabetic suffering from toxema and wasn't treated for either. I was 11lbs 7oz when I was born 20 days early. I got stuck and the dr used forceps and pulled on my arm. I was put through tests and therapy that were terrible untill my mom couldn't stand me in pain anymore and everything was stopped. The subject was basically taboo in my house. I learned to cope. Now I find myself having more and more pain and a decline in my strength and ROM. My shoulder is malformed and I can't straighten out my elbow or turn my hand over. I can't put my hand on my hip or over my head. the only way I can scratch my head is to contort myself. I do have pretty good use of my fingers though I find I have problems making them do things different from my other hand (typing gets confusing). I feel like crying because I never knew so much of this stuff and now I'm afraid that I'm going to have more problems in the future.