NOT SURE IF I HAVE BIRTH BPI? HELP.

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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leigh76
Posts: 1
Joined: Sat May 28, 2005 2:33 am

NOT SURE IF I HAVE BIRTH BPI? HELP.

Post by leigh76 »

Hello everyone, This site has been a great source of information and i'm looking for some advice. You see I have never been told if I have a birth bpi, I was adopted and this is what I know. I am 28, from Australia, I was born through forceps delivery and i was born with a wrist drop, I had extensive therapy when i was young, I have scars that seem to come from some type of surgery on the side of my hand close to the wrist, the arm affected left arm, is still shorter than the right, reduced muscle density on affected arm, I cannot lift my arm past my shoulder and if i try the pain is really bad. My hand does not work properly when it is cold and in the cold the pain is to intense for me to handle, and a lot of the time my hand feels like a rubber band streched right out and it wants to retract back - like it feels streched all the time. Also my hand is a different size to the right and it is on an angle. And it is hard to hold some things. I am sure i could think of other symptoms but i do not wish to take up to much of your time reading this. I wish to find an explanation and finally put a name to what i have suffered all my life. I have seen many doctors who told me it was all in my head but the physical evidence does not lie, please could someone help me and let me know what you think. I appreciate any thoughts on this, plaese help me to put an answer to a quest that started over 10 years ago, god bless and thankyou,
Leigh Summerfield
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: NOT SURE IF I HAVE BIRTH BPI? HELP.

Post by Kath »

Leigh
I don't know where to begin. Since you are adopted it may be hard to get your original medical records. Do your parent know if you had surgery before you were adopted. If your parents had you under the care of a doctor who gave you therapy perhaps the doctor has seen your medical records.

I appears as if you are bpi injured from your description of your arm.

We have a Mum from AU who use to post regularly and I will contact her perhaps she can help you find a bpi doctor who will be able to help you.

I will ask her to post or e-mail you.
Welcome to the boards and if you have any questions post them and someone will try to help.
Kath
Kath robpi/adult

Kathleen Mallozzi
erik_olson
Posts: 12
Joined: Thu Mar 24, 2005 1:06 am

Re: NOT SURE IF I HAVE BIRTH BPI? HELP.

Post by erik_olson »

Leigh, from the symptoms it sounds like you have arrived at the right place. You must have read others' descriptions here with more or less similar combinations of things.

I had forgotten what to call this until reminded by a family practice doctor a few years ago. Once when I was 18 I sought out an orthopedic doctor to get some advice with coping. That led to a physical therapist who was able to teach me some better habits. Above all, take care of your good hand.

I have 3 stitches on the pinky side of the wrist from a tendon transfer, which required two other larger incisions on the back of the wrist and inside surface of the arm. Don't know if one incision is enough to do something with the tendon, but, the objective had been to correct the range of motion of the wrist to straight, and rebalance muscle and bone growth.

One of the prepatory steps for that surgery was a characterisation of which nerves were damaged. Some test like that would surely tell you precisely your diagnosis. It was basically an electric shock test, but I took it pretty well as an 8 year old (and was happily playing with Lego an hour later.)

If you can't find a bpi specialist, at least look for an orthopedic doctor (perhaps pediatric, as any doctor is likely to see bpi in children more than adults) who can perhaps refer you to a neurologist who knows what to look for.

I'm not an expert or anything, just a patient speaking from my experience only.

Keep posting Leigh, you're quite welcome here.

-Erik
rbpi, 36, Wisconsin USA

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