United Brachial Plexus Network, Inc.

Hi there Vanda and Family. Sorry for the delay in getting back to you. Calgary - Toronto....my goodness what a distance. How do you manage that? Are there no resources closer to you? I'm just learning more about my Erb's Palsy after 53 years. I am absolutely no expert in it and all the surgical procedures I had happened in the mid sixties. The only think I can tell you is my left arm was broken in several places and rotated that way. I had body casts (from the waist up) that positioned the arm in it's new position. IT MADE THE BIGGEST DIFFERENCE IN THE WORLD FOR ME!!!!!!!!!!!!!!! Yes the arm was bent, yes the arm was shorter, yes it was weaker, but no one could tell I had Erb's Palsy. I was able to carry things, pick up just about anything I needed to, wash myself better. It just worked better and worked more closely like my right. All I can really tell you was the splints and excercises that the other doctors perscribed did not work for me. AT ALL! I had always wanted to play the drums. My Mom and Dad got me a drum set when I was just nine. They didn't have for themselves, but they managed to get me one piece at a time starting with Christmas 1962. It was the best Christmas I ever had. My Mom took me from doctor to doctor and never gave up. In July 1964 after my Mom had contacted the Hospital for Sick Children in Toronto. I saw Dr. Robert Salter and his assistant Dr. Filler. I remember the "horse stalls" that they had you waiting in before you got to see the doctor's room in the outpatient clinic. You can imagine you enter one door into this stall and then someone would open the door at he other end when they were ready to see you. When I walked in several doctors and interns just starred at me for several minutes, not saying anything. I can remember starring back at them. Nothing being said. Then my Mom told them my history and Dr, Salter said you have Erb's Palsy and I think we can do something to help...for sure. He had me walk around the room, rotate both arms, wrists, put my arms above my head the best I could and gave me things to hold. Then I remember him talking TO ME as if I were an adult. He told me it would likely take several operations and I would require being in casts. It is a lot to go through for such a young man. You have to want to try with us to make things better. It is not about what your Mom and Dad wants. It is about what you want. Dr. Salter at the time was the chief of surgery for the Toronto HSC and the leading expert in Canada on Erb's Palsy. Dr. Filler went on to become the Chief of Surgery after and has just retired I believe. No harm in asking Dr. Pape what he thinks of my story. See if he can draw on the case studies that were done at the Toronto HSC or has knowledge of them. I think it may me worth a try. My file is there and I would give you permission in a heart beat to access it to see what was done for me and if it might have validity still. There is a serious ERB'S PALSY RESOURCE THERE. I know they would see you. I WOULD EVEN COME DOWN THERE WITH YOU IF YOU WANTED ME TO.

I still have my drum set and I can play an an orchestra level today.

Thank you for writing Vanda.

Corey

Corey,
Welcome to the message boards .I am so glad that you found us. I am 45 robpi and remember the first time I found this site. It was amazing knowing that I was not the only one with this. There is an adult site obpi adult board where you will find more adults with this injury.If you have any questions just ask away....Judy

Corey

Welcome to the message boards.
If you would like to read about other obpi/adult here is a link to the adult/obpi board Introduction post.
http://ubpn.org/messageboard/thread ... eadID=1489

It's amazing that no matter where we lived or how old we are, we can all relate to the taunting, teasing and lack of teacher intervention... I also feel that was really hard and even if we forgive it's hard to forget.

I'm glad you found us. I found UBPN 1999 and until that time I thought I was the only one in the world with this strange injury.
Kath/adult/robpi