New and confused

[blutzow]

I am new to the forum and new to BPI knowledge. If I have posted this in the wrong area I am sorry.
Well here's my story maybe who ever reads this won't think I'm crazy like the doctors do.

I was born in 1992 in a birthing center then they measured the baby's head but not there shoulders. Well my mother being 4'11" 90lbs I obviously didn't fit. By the time they noticed it was too late.

My arm was paralyzed for the first 8 months of my life but due to my mother being in the medical field she did physical therapy 4 times a day. By the time i was 3 i was riding horses by myself. Then at 4 I started dancing and gymnastics. I soon after noticed I couldn't supinate and my left arm was weaker. I was taken to about a dozen doctors and they all told me the same thing I had nerve damage there was nothing they could do.

The interesting thing is eveen though I had a birth injury I had never had a nerve test. And every doctor my mother found refused.

I started competing in dance when I was 6 and by the time I was 10 I was in national competitions. I then noticed how tight my tendon in my elbow was and how my supination was extremely lacking.

I shattered my left arm in dance when I was 13 and had to retire. When I was 16 I started competing in ROTC pt competitions. Then when I was 17 I took everything in my own hands. I went to a well known neurologist and told him I needed answers.

I was tired of being ignored and not listened too.

This neurologist told me he couldn't do anything till I was 18. So I had more waiting. When I turned 19 I finally got the go to have a nerve test done. He was amazed my forearm was over active my deltoid was overacting and scapula muscles were weak and so were my bisceps. he said I had erbspalsy that I had a brachial plexus injury.

I then saw a doctor at my mothers work who just wanted to look at me. And he was amazed looked at me for 2 hours just holding his chin saying hmm... Supposably I should've never been able to be a active child let alone competitive dancer. He then diagnosed me with dystonia. Also that my winged scapula was bad.

He said the branch of nevers controlling my lower biscep also controlled my lower left back and both muscle groups were perminitely tense causing the tendon in my elbow to be tight. As well as the back muscles being tense on one side caused me to have Scoliosis.

So about 2 months ago i was sent to a different neurologist and the decided they were going to try and fix the tensed muscles. So I had botox injections. In my bisect and lower left back the dosage was spread Into 22 shots into my bisect and 14 shots into lower back. He accidental hit my scapula muscle so my severe winged scapula is now a winged scapula that makes me not sleep at night. I can wing as far as 4 to 5 inches out depending on the weight I'm trying to hold. It also wings in ever direction like every muscle is bad instead of one.

During the procedure they gave me anti anxiety which the now know I'm immune and 2 doses of twilight injection. And I am immune to that too. So they had my mother and 2 nurses hold me down. Only because they found that my nerves are beyond hyper active.

I am now in physical therapy for over a month now. Staying positive and staying I think it's helping... When in the back of my head I don't notice anything. I still struggle doing a biscep curl with a 1 lb weight. And I still can't supinate my arm.

Sooo.... That's my story. I am sorry it's so long. But I am curious is there another adult that has gone through what I have or has experienced any of the same problems? Maybe a way to help the supination or how they were helped. Also the winged scapula.

[cristinam]

Wish I could give more useful input, but the one thing I recommend is don't keep quiet. Your therapists and doctors need to know what works and what doesn't work so they can change it and do something to better the situation. If they think it's working they won't do anything about it.. Good luck with everything!!

[jmar]

one thing i could tell you is DO NOT see a regular neurologist. make sure it is a dr that specializes in BPI injuries. i made that mistake and i regret it severely. under the resources tab above, there are a list of specialists. there is dr mackinnon in st louis missouri that is not listed on here, but she is awesome if you live in that area or can travel. there are good BPI specialists out there, but make sure they specialize in BPI, not just an ordinary neurologist.
good luck and hope the best for you.

btw i was injured over a year ago. so i really dont know about the childhood part of it. cant help much there. sorry

[SarahxG]

Hello!
My name is Sarah. I'm a few years younger than you (will be 16 in December), but I would really love to talk. I can relate to your story in quite a few ways.

You can email me at SarahxG@yahoo.com
Hope to hear from you!

[Carolyn J]

Welcome to our UBPN Family blutzow !
Carolyn J
LOBPI/73+

[arleen486]

I am also new and have lots of questions, so please help me thru them. I am the grandmother of a 6 moth old who was born with I cas it is called shoulder dystonia? and Dr Nash in Texas wants to do Mod quad surgery on him & Triangle tilt surgery on him but we do not know anything about this and we really don't know much about Dr Nash? so we are really lost this is all very new to us. we really don't know much about this OBPI? can any one help?

[arleen486]

I am still looking for answers? can any one help????? please???

[Carolyn J]

Welcome to UBPN Family, Arleen.
On the home page there are links to click to information, Glossary of terms and a Medical Resource Link too for BPI Specialists and Therapists. 1st , it would be wise to get an evaluation from one of the BPI Specialists. FYI Dr Kozin, Shriner's Hospital in Philadelphia, cares for children up to 21 free of charge and perhaps can assist with transportation; there is a Ronald McDonald House available too. There is contact information on the Link pages under "Medical Resources"...our Home page.

Also it would help if you asked specific questions.
Best Wishes...also,there is no such thing as a dumb question except for the 1 not asked.

Carolyn J
LOBPI/73+

[brittwitt]

I also 19 and found your story really interesting. I have always known I have a LOBPI so I didn't have to search for answers like you. Good for you for being heard and not taking no for an answer! I was really active growing up too and played soccer, did swimteam, and ran cross country. I have scoliosis as well that is pretty bad. I wore a brace for a little while but I mostly just try and keep my core muscles strong to ease the strain on my lower back. My supination is also not good but I don't really have any advice for helping it. I can't curl my bicep at all so I'm just not sure how! I do get tightness in the tendons around my elbow too though. I go to a massage therapist about once a month who gives sports massages (I'm a runner too) and she works out the knots and tightness in that area. She also works on my tight back muscles from the scoliosis and gets the knots out of my good arm (she thinks I am starting to get tennis elbow from overcompensation). I haven't been to physical therapy since I was about 7 but I have been getting the massages about a year and they keep me from getting too stiff.

Hope that helped a little! My email is brittwitt92@gmail.com if you ever want to talk! You can definitely email me too Sarah!

-Brittney

[Carolyn J]

Brittney,
You do inspire me. I hope you continue to come here and share. It is sooo important for people to hear/read from someone your age & determination.
HUggz,
"gramma Carolyn J
LOBPI/73+