United Brachial Plexus Network, Inc.

Has anyone ever had an MRI or anything that would show the differences in the good arm and shoulder vs the Erb's? I sure would like to know exactly what my injury is. The Dr. who did my EMG told me that I used "other" muscles to facillitate movement in my Erb's arm. He just wouldn't take the time to explain. Any ideas what tests would give that info? Pat

My daughter Maia had comparison xrays and scans done - the differences were remarkable. It showed that although Maia's affected arm measures bigger (!) it's because of edema. Her muscle mass was half of what was in the other arm if not less. That's the part that surprised me the most I guess.

Do those comparisons show the damge to the BPI arm? For instance, I'm supposed to have a bone in my shoulder that didn't delelop--but I want to know which one. Also, my wrist bone in underdeveloped. I'd like to know why? Also, the compensation--using other muscles--can anyone do that? which muscles were used to take the place of --maybe the deltoids? I guess I resent the fact that just because this is an old injury, Dr
s aren't inteested. I know when I was a baby, I had a splint --I have a picture of it. Supposedly the Dr. left it on too long and I went from having a straight arm that hung down and moved a little from side to side to an arm that couldn't pronate or straighten at the elbow. I do know my mother took the arm out every day and massaged it in warm water. I'm glad she is coming to camp with my. My injury was in 1953. I thought I'd bring pictures and she might be able to share her experience in a time when there was no surgery and not a lot of help.Pat

OHMYGOSH Pat - it will be wonderful for your mom to be able to talk to us..wonderful for us and probably really wonderful for her too. I'm sure that back then she probably had no one who understood this at all.

About the scans - bony differences will definitely show but which muscles are doing the compensatory work? I don't know what would show this. Maybe there is some unit of some kind that assesses functional movement? If I were you I'd go to a hospital that is a serious rehab center and ask one of their rehab specialists about this... there must be something they use to see what's moving what. Good luck with this!

-francine

Hi Pat,
I wanted to tell you how happy I am for you that you can share all of this with your Mom and even go to camp together. I wanted to share something that happened to Brittney and I over the Christmas holidays because it kind of reminds me of what you might experience at camp with your Mom. Brittney is almost 11. We were at the annual Christmas party with co-workers of my husband where everybody brings their families. We had all been hitting the buffet table of cookies and cheeses and stuff pretty hard and visiting with other families. A man walked up to Brittney and I and looked at Brittney and says, "Brachial plexus injury?". We probably both looked silly - nodding and all - Britt and I look at eachother almost in shock I think - but it was a moment where we understood eachother's thoughts. For years no body has ever heard of her injury and here this stranger actually knew the name of it. Brittney and I talked about that the whole way home. I can picture you and your Mom having lots of moments like that at camp - times where just the two of you share the same thoughts. I'm really happy for you!:) (sorry I got off of the subject),
Christy

I have only run into one person that asked me if I had Erb's. I was training at a nursing home in Pennsylvania. The woman's son was 12 and had Erb
s. I wish I had known about this site then. At the time, I was a little embarrasses, because I didn't realize it was so noticeable. ( It you don't look in the mirror and see it, it ain't there) Now--when I'd love to run into someone I could sit down and share arm stories with-- I haven't run into a soul.
The Dr. who delivered me-told my mom that my arm would heal without a problem. A family friend convinced her to take me to an ortho who splinted the arm . He yelled at her for waiting for so long.I do believe I am luckier than a lot of Erbies-- I can use my fingers and have a pretty good grip. I can also lift the arm to my lips--although I can't do anything once I get the arm up that far. In a way, I think I'm better off than the TBPI. At least I never knew what I lost.
Anyway, hope to see you at camp. Pat