United Brachial Plexus Network, Inc.

Heather-
I agree. Every surgery, no matter how routine and proven effective, started out experimental. I too am thankful to all the people out there who have taken a risk. I think it's up to the parents and the unique situation of the child whether they want to undergo surgery. Like many of the other parents have said...sometimes the trade off of function is worth it.

zak is 3 and had surgery at 71/2 months. his injury is c5 c6 and partial 7. he had a neuroma removed (scar tissue). the nerve to c5 c6 was almost severed but not completly. now we go to gillette tomorrow. last visit he had xrays and his humerous was a little smaller. this was becaus his ball socket bone was rubbing on his shoulder bone? it is now flattening the socket, and it may soon fall out of place. i am not sure how this works, i will let you know tomorrow.

ps. everyone has a longer arm and fingers and hand even if slightly. this would be out dominant hand. that is how forensics can tell if the person was left or right handed. this would be true. just like with torticollis, everyones neck moves further on one side then the other. and everyone leans a certain way or carries a purse on the same arm that can cause slower growth in shoulder. also a wallet in a mans pocket can cause misalignment.

Ann...that is so true about the neck part. I always turn my head toward my left when lying down. In fact I just tried turing the other direction and obviously I can, but it feels awkward. This is what I thought was going on with Jacob when he kept his head that way most of the time. Our therapist says that he didn't have torticolis b/c he could turn the other way he just seemed to have a preference toward that side. Now his head is flat on the side and we are possibly going to have to wear a helmet.

i have a jake too he is 7. anyways zak 3 had torticollis. his neck was completly stuck to one side for about a year. this was difficult. he is better in that area now. he can move his head righe 60% and left 80%. this is also normal for people who have no bp injury.

I actually think it could be a combination of the two - lack of use and sitting higher in the socket. I am 34, have almost no use of my OPBI arm, and it's about 6 inches shorter, and my hand is very small too. All that is from lack of use because, as someone else said, bones grow in response to stress on them use. But also, my arm is pulled up another inch or so higher because of the muscles I do use in my shoulder. Because that muscle is overdeveloped, my left shoulder looks higher than my right, and it seems my arm sits a bit higher too.

Another thing to watch for, that I just discovered recently, is bone loss. Because I can't use my OPBI arm, the bones are much weaker. I haven't broken anything but my thumb, but the x-rays looked like swiss cheese! The doctor said he'd seen bones that bad in some 90 year olds, but rarely. So I urge you all to take calcium, do exercises, and be careful!

we went to gillette today, good news, better than expected. we dont have to go back for 6 months. his ball socket looks rounder than before. anyways he still is about the same just cant put his arm to the side and reach up that high, ann