United Brachial Plexus Network, Inc.

My Mom always used warm olive oil... I was massaged a few times a day... I don't know about vinegar. But she said that is why I married and Italian... LOL...
Thank you, I think she did a great job... Now that I know why she was always making me move... I always said my Mom was the worlds biggest nag... LOL.. and it worked... Now that I know more I am proud of her nagging and ashamed of how annoyed I use to get.

Kath

Erb's Palsy is what everyone was told... that was the only name the doctors gave. That is if your parents were lucky enough to get a name... My biceps was always so thin.. my forarm has some feeling but not all same with my fingers... I just never noticed until someone asked. my wrist moves my hand but no palm up... my elbow only bend into waist and my shoulder does the rest... but it works for me.

I was shocked when I found ubpn and that was only because I saw the word brachial plexus and was curious...

Then the more I read the more I realized it was me! all these years I thought I was rare and a miracle... lol... I still think my Mum's gut was what got me through. Everything was therapy... clothes pins - clay - turning my bike upside down and peddeling with my hands and arm.. learning to jump rope. doing cartwheels (that I did one handed but I could fool the teacher) I thought for many years that I was picked on... I had to peel veggies... yes I thought I was cinderella instead of the princess but it did work... she could never teach me to spell... she tried... but I guess the disconnect is a good excuse... I was forced to write with my right hand too... that was painful... very painful... but I did it.

I still think a long term study on how we were treated would really help the children and newly bpi injured. Perhaps preventing overuse as much as possible and also helping the children to better use their arms and body preventing secondary injury. I think if they study obpi and long term tbpi they may find some interesting new treatments. Hindsight is always 20/20 now I can think of a lot of things I could have done to prevent over use and the severe arthritis in my hands.

Kath

Thank you all for replying. Wow Kath - you always inspire me. You have so much information that is REAL. Jenny, you always are so helpful too - thanks! I read things about studies done but it never tells if the one who did not get good use back was ever continuously urged to use the arm or if it was pinned or exactly what happened during their childhood. I have always felt that Brittney had a pretty severe injury at birth but I do not know how to tell. Brittney did have finger movement though. I guess at this point I am just curious now that I know more about her injury. We've been told when she was about seven that she has a mild/moderate stretch injury of C5 & C6. I think that C7 was injured too. Brittney had nothing from the shoulder down to her hand at birth. Her arm hung - for months and months. At 5 months old she could lift her straight arm off of the ground about two inches if she was on her back. Most of her movements were made from her shoulder and still are. She could lift her arm but not bend it for the longest time. She could grab toys with her injured hand and then she'd grab the other side of the toy with her other hand and pull the toy to her mouth so it appeared like both of her arms were bending but really only one was doing the lifting and her injured hand was just hanging on. I'm thinking that her arm strength might have come in because of her grip. She'd grab on and not let go so I could move her arm all around or have her grab something like a pole and then move her back and forth trying to get her to pull herself in. She just couldn't move her left arm the way she wanted to - especially bending it - it was always straight to her side. I stayed home with her by myself all day while Chip worked - she is my first child and there are four years in between her and her younger sister. I didn't know about oils and vinegars but I was told to just keep her arm moving so I did - non stop. I think that because Brittney had finger movement and could hold on to toys - that helped her alot to use that arm. Kath - you do sound like you had a very severe injury and your Mom and family worked miracles and so did you. Britt didn't have the marble feeling in her arm and she did have finger movement at birth but her bicep and everything else took years of therapy (mostly home therapy). Her therapists when she was young didn't have any experience with these injuries so I just did the best I could with thinking up ways to have fun while using her injured arm. She was five before we found a good therapist who understood more about her injury. I believe that her nerves reconnected themselves somehow and that is how she is able to lift her arm and bend her elbow. Her arm strength has always amazed me. She was not always in the moderate category. I feel that the amount of nonstop use of the arm and other things like oils and massages do figure in to the amount of recovery and how well the injury can heal itself and how the nerves reroute themselves if they are stimulated for growth in a positive way. I also think that there are more driving forces to this injury than we know about and we can all learn so much about recovery from those who are now living with this injury.
Thanks again everyone,
Christy

If a muscle is not innervated by 12 to 18 months after a nerve injury, it will no longer be able to receive signals from the nerve, even if the nerve has found an alterntive path. And nerve regeneration/growth happens very slowly. That is why timing is so important with nerve regeneration; it's a tricky balance because you want to let the nerve self-correct as much as possible, but you always have to keep in mind that the window of opportunity closes.
Cathy

for Cathy, thats what I was told too- I think that is standardized info- doesnt make sense to me anymore tho- just my big O tho

> In reading your response in relation to avulsions I would tend to agree that what you had stated was the "normal" medical advice in terms or nerve-muscle reinnervation. EXCEPT... there are instances that the "window of regeneration stays open."

I am right tbpi. C8 pulled from the cord C5, 6, & 7 extensively damaged from a motorcycle accident in 1985. In the winter of 2001- 2002 my pectoral muscles (wiped out in the accident) reinnervated and I now have limited use of themn - not enough to move the arm, but... Also my wrist and fingers now have limited motion in them as well - regeneration within the last two years - and I am post injury almost 17 years. I am certainly not very functional with the fingers and wrist, but it is still pretty cool that the Drs. don't know everything...I excercise them when I think about it and they definitely are getting stronger.

So there is always hope beyond the usual medical definitions...

respectfully,
Bill

Thanks for posting Bill, i was amazed at getting my biceps more than 2 yrs after my accident (motorcycle like you) but your recovery is really impressive. Did anything happen that you think might have stimulated the regeneration? I have read that these things can and do happen, but noone knows why. I have cut and pasted your post onto the tbpi message board, i hope you don't mind....:0)

thanks for the reply, sorry for my delay...

only clue I have is prayer...probably more prayer from others than my own this far out. (Occasionally I still dream two handed)

I have gotten used to the one handed thing and don't really pray for it that much. My prayer has been for Jesus to perform a "restoration." What is intresting is that word restoration is what others (outside my circle of friends and family)usually pray for me too. ...and now my main issue is the pain in the good arm from the overuse...glanced at your web page - pretty cool. I'll go back and visit when I can spend some time.