any information for a new comer??
any information for a new comer??
hello my name is sabrina, i am 25. i have had OBPI on my right side since birth. i have limited use of my arm and "retarded growth" in the arm. i just recently found out what my disability was called from internet research. my mother had little or no information for me over the years and doesn't like to talk about it because she feels responsible so i started looking on my own. i have recently read that the first year of life you can actually have a nerve graph from your leg to try to improve use in the arm and i was wondering if anyone had any information on a similar surgery for adults that may work?? i would also like to say that this site is fabulous and i am so happy to know that i am not alone out there! in my whole 25 years i have never seen or heard of anyone with this disability but knew somewhere someone else had to have experienced it! thanks to whoever started this site! any thanks to any responses you guys can give me!!
Re: any information for a new comer??
Hi there! I'm more or less in the same situation as you, it seems. I'm 24 and I have LOBPI and never really knew much about it until recently. The only reason I knew it was called Erb's Palsy was when I was in my early-mid teens, my dad told me if I ever get drafted for whatever reason, so to mention the phrase Erb's Palsy. I found this website a little over a week ago and it's awesome. I'm totally interested in hearing whatever anyone has to say about your query! Sorry I don't have any guiding info myself. All I can say is that I know how you feel! This website is great at that.
-Chris
-Chris
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: any information for a new comer??
Hi, welcome! I am 33, and am LOBPI. Growing up called it Erb's Palsy as well.
As for nerve surgery for adults who are OBPI. No, can't be done. Primary surgery as it is often called can only be done one "newly" injured arms, so for babies or people who get their injury later as a result of an accident/trauma (TBPI).
There are secondary surgeries you can have done, involving muscle transfers. Not everyone is a candidate and it is not always worth it depending on how much function you have or "may" get.
Finding a BPI specialist would be the first thing to do to evaluate the possibilities and see what your baseline is.
I had a tendon transfer when I was 14, it was only partially successful due to the shoulder joint damage already there. When I was a baby they only did nerve transfers if the baby was 3-6 months old, they thought later than that and it was too late... and since I was in the NICU for the first 3 months no one really noticed that my arm was partially paralyzed until I was about 4 months old and no one wanted to add surgery to the list of issues I had at that time. Turns out that it's not true, but that was nearly 34 years ago and they didn't know much then!
Marieke 33, LOBPI
As for nerve surgery for adults who are OBPI. No, can't be done. Primary surgery as it is often called can only be done one "newly" injured arms, so for babies or people who get their injury later as a result of an accident/trauma (TBPI).
There are secondary surgeries you can have done, involving muscle transfers. Not everyone is a candidate and it is not always worth it depending on how much function you have or "may" get.
Finding a BPI specialist would be the first thing to do to evaluate the possibilities and see what your baseline is.
I had a tendon transfer when I was 14, it was only partially successful due to the shoulder joint damage already there. When I was a baby they only did nerve transfers if the baby was 3-6 months old, they thought later than that and it was too late... and since I was in the NICU for the first 3 months no one really noticed that my arm was partially paralyzed until I was about 4 months old and no one wanted to add surgery to the list of issues I had at that time. Turns out that it's not true, but that was nearly 34 years ago and they didn't know much then!
Marieke 33, LOBPI
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: any information for a new comer??
Hello Sabrina,Chris too, and WELCOME to our UBPN Family!..that is what UBPN network of people is to me. I never had a name for my Injuries until I was 65 yrs. old and found this web site of wonderful people, information , SHARING of life experiences, SUPPORT and Healing to of emotional issues that came from thinking I was the only person with these injuries...that is until finding UBPN in 2004. Since meeting other adults at UBPN FAMILY CAMPS 2005 & 2007.life as I age is soooo much better.
I really suggest having an Consultation with a BPI Specialist,there are Listing of BPI Specialists who se adults on our Home page Link to "Medical Resources"...
Even tho it was/is to late for surgeries for me, I saw a BPI Specialist in 2006 and got a lot of answers to questions I've had about my Injuries. It helps alot to know for sure the nature of our injuries. This is only my experiences and only a Suggestion.
Keep reading, there is alot of information here. FYI, you can type any word or Topic in the "Search FORUMS " box link at the top of any page and al the post on the subject wil come up for you.
Also, there is no such thing as a dumb question and everyone is welcome on any of the Forum message boards. I learn soo much from parents on the General Board and the Traumatic Injury board as well. We are never to old to learn!
Carolyn J
LOBPI/ age 70 & loving it now!
Message was edited by: Carolyn J
Message was edited by: Carolyn J
I really suggest having an Consultation with a BPI Specialist,there are Listing of BPI Specialists who se adults on our Home page Link to "Medical Resources"...
Even tho it was/is to late for surgeries for me, I saw a BPI Specialist in 2006 and got a lot of answers to questions I've had about my Injuries. It helps alot to know for sure the nature of our injuries. This is only my experiences and only a Suggestion.
Keep reading, there is alot of information here. FYI, you can type any word or Topic in the "Search FORUMS " box link at the top of any page and al the post on the subject wil come up for you.
Also, there is no such thing as a dumb question and everyone is welcome on any of the Forum message boards. I learn soo much from parents on the General Board and the Traumatic Injury board as well. We are never to old to learn!
Carolyn J
LOBPI/ age 70 & loving it now!
Message was edited by: Carolyn J
Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: any information for a new comer??
hi folks i'm new to the community never knew it existed anyways brachial plexus is something that i have lived with as long as i can remember.
I was born in Somalia on October 18th 1986 the midwife pulled me out with a lot of force since i had a hard time coming out that basically caused brachial plexus on my right arm. With my family we moved to the Netherlands when I was 7 year old where i grew up. My parents took me to a specialist who basically said that there wasn't much they could do for me other than physical therapy. I do have some mobility over my right arm but it was never a problem for me in the sense that although i knew that i had some limitations when it came to sports like basketball or lifting weights or even doing a push up i never allowed it to become an obstacle and it actually helped me overcome other obstacles. Having Brachial Plexus is something that has always been with me and something that i have learned to accept. Having brachial plexus is not something to feel ashamed of or get depressed about it is what it is and it isn't something that will stop you from achieving your dreams whatever that may be.
I was born in Somalia on October 18th 1986 the midwife pulled me out with a lot of force since i had a hard time coming out that basically caused brachial plexus on my right arm. With my family we moved to the Netherlands when I was 7 year old where i grew up. My parents took me to a specialist who basically said that there wasn't much they could do for me other than physical therapy. I do have some mobility over my right arm but it was never a problem for me in the sense that although i knew that i had some limitations when it came to sports like basketball or lifting weights or even doing a push up i never allowed it to become an obstacle and it actually helped me overcome other obstacles. Having Brachial Plexus is something that has always been with me and something that i have learned to accept. Having brachial plexus is not something to feel ashamed of or get depressed about it is what it is and it isn't something that will stop you from achieving your dreams whatever that may be.