I had NO idea

GinaR · Post by **GinaR** » Fri Nov 14, 2003 2:30 pm

I was just doing some research for a fiction piece I am toying with and found this huge network of others with erbs palsy. I cried. I didn't know!

Why I had never looked online before is beyond me.

I'm heading toward my twenty eighth birthday, mom to three, business owner, writer, wife, New Yorker and have had a bum arm since birth.

I was 11 pounds 14.5 ounces at birth. One month overdue and my mother was just told she was getting fat. There was no attempt to schedule a c-section. Of course I got stuck.

The doctor yanked my shoulder and the rest is history. A few months later, another giorl was born with the same. They sued and won -- adding to my bitterness.

Mom was told I would never use my arm, but she exercised me all day. I finally started moving one finger and since then have always between 35% and 65% use. I have little control over my shoulder and can't straighten my elbow. My arm is shorter, especially when I don't exercise and my elbow naturally curls. My hand is smaller too, of course.

I've lost a lot of mobility since my career change. I spend so much time sitting at a desk now, I have a lot of pain and have to prop my arm on a pillow. I need to get back to the gym to get some good use back.

I could go on and on forever -- twenty eight years worth anyway. But I'll spare you about that now.

i have no idea if the doc is still liable after all this time or if there's new treatments. I am just swimming in the fact that this whole network is here. I was told I am one in a million and here it says 5-10 in 1,000 births. Holy crow!

Gina

Post by **admin** » Fri Nov 14, 2003 2:56 pm

You came to the right place. Many people here have had mod quad surgery at Texas Childrens Hospital done by Dr. Shenaq and Dr. Nath. I got brachial plexus due to a car accident, but I know that many people find out about their birth injury years after it. I hope you get more information about your injury.

Dean-na · Post by **Dean-na** » Fri Nov 14, 2003 3:02 pm

WELCOME!!

I found this website in 5/03. I am 32 & NEVER EVER knew there were others like me. My story sounds exactly like yours. It is so hard to believe that all this time there were others out there. I learned so much from this website. I had surgery 3 months ago TODAY & scheduled to have another in 2/03. I would have never known if it wasn't for the people here. Ask questions & read the previous post here. It is just amazing.

Good luck,
~Deanna

GinaR · Post by **GinaR** » Fri Nov 14, 2003 3:24 pm

Wait! You've had surgery... at 32??

When I was little, they told me the only surgery there was left had to be done before I was 12 (I think). We opted out because it would have been hit or miss and lots of recovery/pain, etc..

It was to take muscles from one side of wrist to other side of wrist to help my wrist turn on command. I can only go about half way.

What did they do for you??

My head is reeling. There was never any hope for my arm at all, and suddenly... maybe there is??

Then maybe hope for my pain too.
Gina

GinaR · Post by **GinaR** » Fri Nov 14, 2003 3:33 pm

I goofed on my stats above -- It's 2-3 out of 1,00, not 5-10. I still thought it was a 1 in 1,000,000 chance all of my life. G

Dean-na · Post by **Dean-na** » Fri Nov 14, 2003 3:33 pm

YES I DID...there are several adults here that have. Nancy Birk (president of this website), Rachel & myself all has had surgery. My shoulder ached so bad (like something was sitting on my shoulder) & now it is gone. Everyone is different. I live in Alabama. We all went to Texas. Dr Nath did our surgeries. Francine has a website that has so much information. I wish I knew it my heart. Her daughter, Maia, has bpi (brachial plexus injury) like us.

I thought that it was way too late for me to have any surgery too. All the doctors that I have seen in my state gave me no hope. I even went to one right before I had surgery & he told me that it wouldn't work...I proved him WRONG. I go back in February to have another surgery on my bent elbow. This surgery is called bicep lengthening & it will straighten it out..is that not awesome!!!

~Deanna

GinaR · Post by **GinaR** » Fri Nov 14, 2003 3:34 pm

Try again?? 2-3 out of 1,000.

GinaR · Post by **GinaR** » Fri Nov 14, 2003 3:37 pm

This is exactly what I need - from the sitting on my shoulder to the bent elbow.

Right now I've tucked myself on the couch with a pillow and my arm slightly twisted behind. It seems to help the pressure. I've never had pain like this from my arm before.

So apparently finding this site is great timing!

Where do I find the information? if you know her forum ID I can look to see if her website is listed in her profile.

Thanks so much, Gina

Dean-na · Post by **Dean-na** » Fri Nov 14, 2003 3:43 pm

Gina the homepage is

http://www.injurednewborn.com/maia/homepage.html

GinaR · Post by **GinaR** » Fri Nov 14, 2003 3:44 pm

Great, thank you. I will go check it out. Gina

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