Can anyone offer advice?

[Baeta]

Hi all,
I've been trying to find resources for possible surgeries or therapy for my BPI. However, when i look at the surgeries or therapy it all doesn't seem right for my uniwue condition. I have practically no numbness at all and i can move my arm. what I want to get fixed is my elbow that is locked and won't bend and my wrist is paralyzed. I went to check out Dr.Nath's website but the only surgery they talk about are shoulder surgery.I'm not even sure if there is anything wrong with my shoulder, if thats the cause of my back pain. To put it short i'm clueless pretty much lol. I just started feeling like if i have no numbness and am able to compesate for things that there is no surgeries out there for me. Most doctors i go to do not know how to treat my injury or know much about it so i feel so lost. I live in missouri so i don't know if there any specialist who can help out here. I just don't know where to start. Will OT or surgery even help me know that i'm an adult? i've never had surgery and my mother stopped OT because it was causing me a lot of pain and she didnt want me to go through that. I would appreciate all the advice I get.T hanks for reading.
~Beth ROBPI/21Y/O

[Carolyn J]

Hello Beth,
I highly recommend seeing a BPI Specialist 1st to get a correct and full picture of your injuries. Every one is individual and different. The 2 places that see adults are Mayo Clinic and another in Houston TX. Please go to our Medical Resources link for Adults for information. I can share, even at age 68(to late for surgery interventions), I had a Consult with a BPI Specialist and recieved alot of answers to the pain I lived with all of my life thinking I was the only one with this "rare" birth injury.

I also recieve alot of information on these Message Boards of how to relieve this pain, even on the "General" Board from parents. Knowledge is empowering and gives me alot of peace.

Hugs,
Carolyn J
LOBPI/70

[s8n]

i'm in missouri.i went to st. louis to barnes jewish hospital.there is a plastic surgeon there named susan mcinnon she wrote the book on breakial plexus injuries.she is very hard to get an appointment with so be very persistant.but after talking to her she had her associate dr. thomas tung talk to me.he did the work on me and now i'm just waiting to see what happens.but i live 2 hrs. away from st. louis and every dr i talked to down here told me that she is the one to talk to bout bpi so i recommend you see if you can make an appointment.good luck.
regards,
daniel

[CSMITH]

THAT IS WONDERFUL NEWS,I HAVE ALSO BEEN WONDERING THAT SAME QUESTION.THANKS DANIEL.I ALSO LIVE IN MISSOURI ABOUT 1.5 HRS. SOUTH.NOONE HEAR KNOWS JACK ABOUT BPI AND I HAVE BEEN WANTING SOMEONE CLOSER THAN TEXAS TO LOOK AT MY ARM.
THANKS AGAIN
CONNIE

[s8n]

lol that's really funny i live in cape girardeau too.i thought i was the only one here with a bpi injury.small world huh.i got mine through a motorcycle wreck.but wow that is a trip.yea just call barnes jewish they helped me out.they did the surgeies and now it's the waiting game for me but they seem to knowalot about it and everyone there was great.good luck.
daniel
ps if ya look around town they are having a benefit poker run for me jul.13 at minors h-d that is where i worked my pic is on the flyers lol

[CSMITH]

THAT IS WONDERFUL.I HAVE HAD MY INJURY SINCE BIRTH.GOOD LUCK ON THE POKER RUN.THANKS AGAIN FOR THE INFO VERY MUCH APPRECIATED.
CONNIE

[Baeta]

Hi again,
Thank you Carolyn and Daniel for the helpful advice! I actually work in St.louis and this is the first time i've heard of any specialist. I was so confused on where to start but now that I know to start with an actual BP expert (i tried regular doctors and unfortunately got nothing.)I'm also wondering who i should see about my carpal tunnel? i was diagnosed but never really treated(just to take aspirin for inflamation) should i see a bone doctor, a neurologist? Sorry for all the questions i'm just looking for a lot of answers lol!
~Beth