United Brachial Plexus Network, Inc.

Hi, my name is beth and I suffer from OBPI. I found this place just browsing after I was explaining my injury to a client of mine and wasn't completely sure about everything with my injury. I really felt pretty alone until i started researching. A little bit about myself: I am 20 years old and my BPI is in my right arm. when i was a baby i used to pull my arm up so my elbow is locked and i cannot bend it. my pinky and ring finger are also locked and my wrist is paralyzed/ however, i have a minimum amount of numbness in the arm and have managed to learn and do things the doctors said i would never do. my parents refused to call me disabled. they never did surgery and stopped occupational therapy when i was 8 (the OT hurt me pretty bad) my mother kept pushing me to not label myself disabled and i am so grateful to her for it. I lead a pretty normal life because of it, i am in college and engaged to a wonderful man and i work with children with autism. there are a lot of things i cannot do. there are many things i can. i am questioning surgery or therapies but i'm not sure yet. it kind of scares me. i would like to move my wrist or unlock my arm. i have carpel tunnel in my other arm, which is making things a bit harder, but i deal with it. I am happy i found a site with so many resources.

Baeta,

You have defintely come to the right place and welcome to the boards. There are so many wonderful people with such great insight for people with bpi.

Finding this website and going to the camps has been a life changing experience for me. It's so great to have such wonderful, warm and carinng support here.

Please feel free to ask any questions and you will get many responses.

Rachel from MT

WELCOME BETH!
I too,am glad you found us here. There is instant support and love, information as well as a healthy place Vent...we understand because we experience alot of the same things altho BPI injuries are individually diffent.

Also there is no dumb question and you are welcome on all Message Boards.

Please come back often. We continue to learn from each other too.

Carolyn J
LOBPI/69 and counting..


Message was edited by: Carolyn J

Hi Beth! I am also 20 years old and in college. I too have my injust to my right arm. I have had 5 surgeries for it though with my most recent being last May, so I am not even a year post op.
So if you have any questions about therapy and surgery please feel free to ask me anything! I am still in therapy. I see an OT when I need to for evals or splints and am starting to see a PT on Friday for feldenkrais therapy. I also see a chiropractor and that has been amazing! So if you want any info or just want to talk feel free to post to me or email me any time!

Welcome to the boards!
Hugs,
Amy 20 years old ROBPI from MN

thanks for such a warm welcome! its nice to meet someone my age as well going those this. i have never met anyone with my injury and when i came here i felt good meeting others who understand (though uniquely different). tell me about your sugery, i dont know what is available because i never have had surgery. i would like to straighten my arm but i havent thought about an OT you think they casn help? thanks!
beth

thank you all for being so welcoming to me. I don't know much about my injury, or no anyone who has gone through it so this is very comforting!
Thanks!
Beth

Hi Beth
Welcome to the Club...
It is a strange feeling when you find out that you are not the only one with a rare birth injury.

Most of us here were never treated disabled and have been able to live full productive lives.

One of the things I never realize was that it's possible to injury your unaffected arm from overuse.
When I first found UBPN I was so shocked when I read about all the newborns on the General Board.
I was happy to meet a few adult/obpi posting and we shared so much of our common experiences. It was very healing for me and helpful.
As one of the older obpi I try to warn the young people of secondary injuries. Because we compensate so well for the loss of our limbs we actually began to wear out our healthy arm.
As you can see that you are beginning to have problems now with carpal tunnel. If you read some of the older posts you will see that most of us began to have problems with our unaffected arms in our twenties.
Now is the time to stop the progression of secondary injuries by protecting your unaffected arm. Overuse is a real problem as you get older.
Proper use of your body to function (OT instructions would help) and good equipment for Acts of Daily living will really help you to prevent some secondary injuries.
I was over sixty before I could admit I was disabled.
That was way to late to help with overuse and secondary injuries.

It was thrilling the first time I met another OBPI. We were comparing arms and talking freely to people who really understand. When I am with another obpi, I don't have to say a word when something happens... we both just GET IT! If I am frustrated by the outside world who truly do not understand our limitations. I simply post or e-mail one of my buddies on this board. Frustration can be our constant companion with this injury but as you will see most of the obpi here seem to have a great sense of humor.

Welcome again

Kath robpi/adult

I am new to this site. My injuries are from birth, and by the sounds of it, not as severe as some here. I have a winged out shoulder blade and my shoulder turns towards the front of my body. I am not able to fully extend my elbow and I have problems pronating my arm. This is all on the right side.

What kinds of surgeries have you had, and what is your recovery like? I suffer from new and unexplained pain. Any ideas?

Thanks!

Actually, my parents were offered the opportunity to seek surgery with my arm when i was a baby but they decided to wait. I had a lot of function in my arm so they didn't want to risk it. I have about 90% of full feeling in my arm, my wrist is paralyzed but never really got in the way. and my elbow is locked so i can't extend my elbow at all only up. a lot of people on this board have has excellent things come from surgery, but i'm not one to ask. I have carpal tunnel in my good arm from over use and some time pain in my effected shoulder. I haven't figured it out either.