Amazing to me

[kamren]

I can not believe this is here. I have read so much here, and am still in shock. I am not the only one. I have never met someone who knew what Erb's Palsy was, let alone had it. Even my Drs have been pretty clueless. Nurses rudely asking why they can't take my blood presure in my left arm. Being told there was nothing that could be done. Even PT saying this.

I was relatively small compaired to most of what I am reading...9 lbs 6 oz (my son weighed the same). My shoulder did not get caught but when I dropped into the birth canal, I was coming out shoulder first. My mother was dying, and so the Dr clamped down on my shoulder and yanked. Killed me. The nurses tried for some time to revive me. Then all gave up, but one nurse. Thank God for her.

I was black and blue. Mom rejected me at first because I looked so bad. My arm completly limp. The Drs told her not to do anything to my arm it would heal itself. She thought they were crazy. Her step father had had a stroke, and so she started some of the exercises he was suppose to do on me. Thank God for that too.

It is amazing to me the things in school that happened, that I now relize were descrimination. Lower PE grades cause I couldn't do things....poor grades in typing class, cause I was so slow. Let alone hearing how I wasn't trying hard enough. No one listened when I told them how bad it would hurt.

I was so ashamed of my arm. I learned to hide it very well.

I have pretty good use of my hand and fingers. I can not rotate it out, but it is good. The slight bend in the elbow. But lately my shoulder ROM has greatly decreased. I am guessing I can lift it 25 degrees or so or less.

My entire left side of my torso is sagging. I just saw my FP Dr this last Tuesday...he once again told me there is nothing to do. I cried. Then I started looking online...I thought there has to be something. And then I found this site (amongst others) I discovered there are Drs whose specialty is BPI. Right up in Houston!!! (about a 30 min drive north of us!) I called my insurance company, they have given me a Dr on plan whom I am trying to get with. A Dr Bruce Ehni. I have been calling and leaving messages with his co-ordinator (W, TH, and F) But she has yet to call me back.

To have someone listen to me, believe me, and know how to help would be a miricle!!!

[njbirk]

Welcome Kimberly,

You will find a lot of support here. In reading your post, I recognized many of my own feelings until I found some other people on the Internet and got involved in UBPN.

Like you I am OBPI. I am now 50 years old and had surgery at age 47 that helped me immensely with range of motion, flexibility, new motion and alleviation of pain. So yes there are things that can be done even for adults in mid life. Even if you don't go the surgery route, there are still many things that can be done, with PT, OT and other modalities.

We're glad you found us. We are all learning about the long term effects of this injury and have found that sharing experiences is very helpful and most comforting.

Nancy Birk
UBPN President

[Dean-na]

Hello! I am so glad that you found this site. I am 32 & found this site in 5/03. I can't even begin to tell you how much knowledge I've gained from these wonderful people. I had surgery in 8/03 & scheduled to have another THIS Friday. I agree with you totally about the school & doctor situation. No one here in Alabama could help me. The doctors that I have & will have surgery with are in Houton, Texas. WONDERFUL DOCTORS...

There are still so many children that are being born with Erb's. I am so glad that it is known as a BPI (brachial plexus injury). When I used to say that I had Erb's, people would look at me like I was nuts.

Good luck with everything
Deanna

[Susana]

I am so happy for you because you found this site. I have never heard of that Doctor the only ones I know in Houston are Dr. Saleh Shenaq and Dr. Rahul Nath. Many people here have had surgery with them.

[kamren]

Yes, those are the two names I found, but my insurance says no to them. This is the one they want, so I am crossing my fingers.

People always ask me to repeat myself when I said Erb's palsy. And look at me like I was crazy too. I do not plan to refer to my injury that way anymore. A brachial plexus injury is much more acurate to me and more easily understood.

It is still so hard to believe that Drs still have no clue. 36 years ago when I was born...OK, maybe....but jeez it is 2004, and I am only about 30 miles from a major Brachial Plexus injury clinic, and my Dr says there is nothing? He wouldn't even give me a referal for PT....which is really all I was expecting. I had no clue any more could be done.

When I called my Mom and told her about all these "new" (at least new to us) things that can be done she was just as shocked and thrilled as I. She was saying she now understood why God had sent our family to Houston. So I could be near these Drs. Amazingly I found all of this out 36 years to the DAY my Mom went into labor. Feb 11...in the afternoon.....it was like fate, the timing. The day before my birthday, a wonderful gift. Hope.

[Kathleen M]

Kimberly

Welcome to the boards. I can remember all to well the feeling of not being alone anymore. I was so excited when I found out I was not the only one in the world with this "rare" birth injury. It changed my life and gave me so much information. I found UBPN four years ago and have met so many other OBPI and made so many friends and cyber friends through these message boards. It is so nice to speak to others who understand our frustrations as well as our odd sense of humor.
I never use the words "Erb's" anymore it always caused people to look at me like I was nuts... Maybe because it sounds like we are a salad... LOL... (Herbs)Many times people thought they were funny and made jokes about the name... Now most have problems saying Brachial Plexus and its taken more seriously as it should be.
Please feel free to e-mail if you have any questions.
I am right OBPI and 64.
Kath

[rachelcasa]

Welcome to the boards!! I can understand your joy. I too was amazed when I found this site. I am also 32 and have it in my left arm. I had surgery in Houston last September and will be in Houston again the 23rd for another evaluation for another possible surgery. And how lucky you are to live right next door to Houston. That's great. There are some very talented and amazing doctors there in Houston. Keep after that doctor, they will call you back. And the best part...they listen too!!
Congratulations on finding everyone here.
Good Luck to you.
Take care

[kamren]

I finally got ahold of the co-ordinator...She told me that I needed to see a Dr Fayle first. So I called his office. I figured it would be at least a month before I got in. I see him Monday!!! It is great to finally be able to make some progress on this. I am very hopeful that he can help me:)

[Susana]

"Kamren" how did the appointment go?

[Steve L.]

I thought I had it rough. Amazing... that's the biggest understatement I've heard in a long time. "FREAKIN' INCREDIBLE", that's what your story is.
My hat is off to you.
...and I went through some sh*t...
Now I gotta work on my damn story.