United Brachial Plexus Network, Inc.

Wow! I am glad to have found this site!

Here is a little intro
My name is Katy, I am 24yo with a right brachial plexus injury from birth. I have 2 little ones, 2 and 4yo- they keep me busy!!

I have pretty limited use of my right arm. I did however have a tendon transfer surgery last summer that was VERY successful! They used my brachial radialis and pronator (sp) and gave me the used of my wrist(I can now lift my wrist up) and also turn my palm up which I never was able to do before. I am so pleased with it. THe recovery was a little long, but well worth it. I recently had a capsule release of my shoulder (it was very stiff and tight and weak) but it didnt; do a whole lot besides loosen things up a little.

I am going in to have tendon tranfer done in my shoulder next month to hopefully gain elevation ( I cannot lift my arm past my rib cage area) and also get a little internal and external rotation. I am very nervous since hte recovery for this one is brutal. I have to keep my arm in a brace which stabalizes my arm ABOVE my head. LOL I will look pretty still for a while but I think it will be worth it!

Anyway sorry to ramble on... I hope to get to know you all a lot better!!!

Welcome, Katy. I'm glad you found us. You can post on any forum, and no question is dumb. If you have the time, read a lot of the threads on these message boards. You can learn so much.

I don't have the time right now to write a lot. I am ...

Joanie, 58 years, LOBPI

Katy,

Welcome to our group of friends. You definitely sound like you are a busy person.

This site will bring you lots of great information and you will meet many people who are just wonderful.

Feel free to ask anything on here you will get a lot of responses and helpful information.

Nice to meet you.

Hi!
Welcome to the message boards!
I am 31, soon to be 32 and am LOBPI. I had a tendon trasnfer at 14 yrs old to gain external rotation.
Glad that you found us! Keep posting.
Marieke (31, LOBPI)

Thank you everyone!!

Marieke- I was just wondering how your tendon transfer was. Was is successful?? How long was your recovery?? Did you have to wear one of those "statue of liberty" braces? I am getting so nervous for mine.

Hi,
I got some active external rotation against gravity, but have bone issues that prevented a better outcome, though I am much less tight and my arm hangs in a better position. I also gained more movement in every other direction due to this.
I was in a splint for 6 weeks then a sling for a week. Had PT for 2 years following. My splint was the airplane splint, not the statue of liberty one. There are pictures on my blog if you want to see... I had surgery in October, so it was getting colder, I used to wear mittens to bed at night as my hand would freeze!
There is another young adult on the boards who has had a bunch of surgeries too, Amy, I am sure she could answer some questions too.. she's been busy with work these days, but she checks in quite a bit..
(Ames, where are ya?? LOL)
Marieke (31, LOBPI)
http://nurse-to-be08.blogspot.com

That's really cool. I am glad that I am finally going to get this done. I keep putting it off beause of my current situation.

How was the whole recovery, pain-wise? Did you have to keep your arm in that position the whole 6 weeks? Sorry- I am so full of questions! LOL I have just never met anyone that actually had something similar to what I am getting done. I have actually never even MET anyone with this condition.
You're blog is really cool btw!

Yes, my arm was in that posistion for 6 weeks, but I think at week 4 I was allowed to shower as long as the arm was supported.

Pain... yes I had pain for the first 10-14 days I was taking codeine every 4-6 hrs. The first 5 days was the worst though, then better after that. Sleeping was hard, I could not get comfortable..

Thanks about the blog
Marieke (31, LOBPI)

Katy

Welcome to the Message Boards.

I am happy for us and for you that you found us.

I have a robpi and never met another person with this injury until I was 60. That was the same year a group formed UBPN. I was so happy when I realize I was not the only one in the world with a rare birth injury.

The site has grown and there are lots of great folks posting and some really great ones just reading.

Let's hope some of the shy people begin to post and say hello.

I have had no surgery and love reading about the surgery success that many adult obpi have had.

Kath robpi/adult

Ok so I finally have time to post, crazy week between work and therapy and I just moved yesterday.

But anyway, I am Amy, 20 years old ROBPI and so far I have had 5 surgeries for my arm. My most recent surgery was 11 wweks ago, they took my pectoralis major and transfered it to the base of my scapula. This was in hopes of stabalizng my scapula and relieving pain that I have had since I was about 13 years old. So far no pain at all since the 5th day after surgery!!! I am getting all kinds of function back stuff we were not even trying for so I am extremely excited with the results of my surgery!

I have had 4 other surgeries too but they are all posted on my web site if you would rather look at them there, every thing is in detail. www.freewebs.com/bpimn
I keep a journal (which I need to update again but will do that next Thursday after I get back from seeing my doctor). There are also some pictures of me on there one from each of my last three surgeries as well as some other random pics.

Your last surgery sounds very cool! Congrats on the great recovery from it! I am looking into one last surgery to help me gain pronation but I havent decided what I want to do yet as I am in college applying to the occupational therapy program this fall. I dont want to have surgery next sumer and be weak when I starts the OT classes but then I dont really have a good time during the school year either.
So anyway, thats me in a nut shell.

good luck with your surgery!!!
Hugs,
Amy 20 years old, ROBPI from MN