Mid-20's and Just Learning

[JasonCastellano]

I've lived with my Erbs Palsey (right arm) all my life. As with similar stories, I've was born with no sensation or motor function in my right arm, but gained it over time. I believe I have about 85% motion in my arm, with the common inability to fully rotate or extend my arm out or back coupled with a numb strip that starts at my wrist and continues to my shoulder. All my life, my parents have been honest with me about my condition. From the getgo, I've never been ashamed of my condition and was pretty open with explaining it to the best of my ability...kinda like explaining freckles to people you don't know...its not really that big a deal, since you've always had it.

Now and then I would think about neurological advances that would help me regain close to all functionality in my arm. I'm a trombonist, and it has hindered me for the 15 years I have been playing. I'm reading these posts and hearing all your stories, and it gives me hope that there is something that can be done.

Does anyone know of a situation like mine? I've dealt with this for 25 years, and if there is something that can be done, I'd like to do it.

Any ideas, thoughts, or suggestions?

Any help would be appreciated:)

-Jason Castellano
Flushing, NY

[francine]

Hi Jason and welcome to the message boards!

You posted this in perfect time because on March 8th Dr. Nath from Texas Medical Center will be doing evaluations at a bpi gathering. Dr. Nath is a very well known brachial plexus specialist - the America's Top Docs have rated him to be the #1 pediatric bpi specialist in the U.S. He also works on adults and actually the President of UBPN - Nancy Birk has had two surgeries with him with good results.

So here is the link to the gathering... hope to meet you there!

http://www.injurednewborn.com/tristatemuseum1.html

there is a link on that page to the registration page which you will have to send in soon... there is also contact info for Claudia Strobing - the coordinator on that page.

-francine

[Kathleen M]

Hi Jason

Welcome to the boards... You are in Luck...

The gathering March 8 is the perfect start for you...
As Francine said Nancy had surgery with Dr.Nath and I can tell you her results were amazing to me... She could tell you more. But I met Nancy before her surgery and the difference now is astounding...

I am also right obpi but I am much older then you. I am 63 and until three years ago thought I was the only one with this injury... I had freckles so I could explain them better then I could my arm...

I am going to the NY gathering and look forward to seeing you there... It is so close to you.-- right near Roosevelt Field...

Kath

[Michelle_16]

Hi there

Im Michelle, im from Scotland and im 17. I found these messages boards in August last yr and thats when i realised that i wasnt alone with this injury. From then iv met a lot of good friends older and younger than me and actually met my 1st friend with erbs palsy for lunch. It was amazin bcos i hadnt seen anyone else with the injury b4.

Thats cool you play the trombone! I play the tenorhorn and the french horn!

Im glad you found this site! its a great help!

Good luck.

Michelle x

[claudia]

Hi Jason:
Welcome to the boards. I live about 20 minutes from you! I am on Long Island.

Email me directly and we can talk. I encourage you to join us at the Event on March 8th. Although the Children's Museum is intended for the under-college set, it is still a pretty cool place!! There is, for you a musician, this light and sound area that my tour leaders had to drag me out of!!!

I hope to speak with you soon,
claudia strobing

[admin]

finally another person whith lack of sensation(not good i know)! how have you been able to prevent your self from burning your self if you have burnt your arm before?
Anna

[njbirk]

Hi Jason,
I'm the Nancy that the previous posters were referring to. I have a LOBPI that was an injury to all the nerves of my brachial plexus. I had surgery 2 years ago when I was 47 and it has brought about lots of functional changes. Don't every give up hope for change, it can happen.

We'll all tell you to make sure not to overuse the other arm. I wish someone had told me that when I was in my 20s. Nobody realized there was anything like overuse syndroms.

You'd have to see a bpi specialist to determine if a surgery could give you more movement or function. One of the things we've all learned from these boards is how much our extent of injury differs.

If you do come to the gathering in New York, I'll be there and would love to chat with you. I'm flying in for the weekend (I live in Ohio).

Nancy

[JasonCastellano]

Wow, I'm amazed at all the response I've gotten about my post. Thank you all for your well-wishes and support...it means a lot. I am definately going to the event on 03/08. I'll be bringing my Mother as it would make sense, since she was the one dealing with this issue before I was cognitively aware.

Anna, as far as your question, I've never had a problem with burning my arm due to lack of sensation. The sensory problem with my arm is very nominal. There is only a numb strip, about 1" in width, that traverses the length of my arm up to my shoulder. That's basically the extent of it.

Afer reading Nancy's post, I'm a little concerned about "overuse syndromes". I have no idea what this is all about and I hope I'm not a prime candidate for this ailment.

I look forward to meeting all of you who will be attending the event in Garden City. I should be very informative and finding people who can empathize is always very supportive and reassuring.

Thanks everyone!

Jason

[Tina]

Hello Jason, and welcome.
I am in Michigan am 46 and was born with Bi-Lateral B.P.I., I have been on and off (ok more OFF lately) this board for I think going on 3 years (or is it 4 Kath??). You are right about finding people who can really empathize with our situation, it makes life easier sometimes to be able to talk with someone who knows what you are experiencing. You are also right about being a little concerned about the overuse issue. We all seem to have had to face this problem at some point. Mine started right after my 40th birthday (which was yesterday I think hahaha). Be concerned and careful, but not to the point where it interferes with living Seems no matter how careful we have been, it turns up in almost all of us if I'm not mistaken. I'm glad your going to the event in March. From the sounds of it, you are going to meet the cream of the crop/board (if I do say so myself). So again, welcome

[Kathleen M]

Tina

Its only 3 years... but who's counting... in three years I learned more about bpi then I did the first 60 years.... LOL... duh..

Kath