United Brachial Plexus Network, Inc.

Do a lot of research. I was told it is horrificly painful. It is obviously a very personal choice. My personal view on this is that if my child becomes mature enough/old enough and insists she really wants to have this done, then it would be a consideration. Find out how it may affect function. Mine has been through a bunch of surgeries and has minimum one or two more to go. I just can't see putting her through that kind of agony. Surgeries emotionally and developmentally set her back. Life has been so messed up since her birth due to all the related crap with her injury. A "normal" life seems so strange and far off to me... But I want to head towards that and make it a reality as much as possible. This surgery has a great cost to it and as of now feels like it threatens our heading towards a more "normal" life. There's so much to consider...

I had my ROBPI rotated & lengthened in 2006. It was extremely painful but worth it. I live in Alabama but went to Texas to have it done. I gained about 2 inches. They broke my humerus bone, placed 3 large metal rods in the top of my arm, 6 small metal rods in my elbow. I wore my Ilizarov Fixator for 8 months. I rotated it every 8 hrs for several weeks. Got an infection (which is really easy to get since you have open wounds). I did have to do therapy during this time which was torture in itself. I gained a lot of rotation but not able to bring my arm behind my back or toward my stomach. It was the hardest time of my life. I kept a journal during those long months & look back at it often. It messed up my ulnar nerve & had to have surgery after "Lizzy" came off. Good luck!

Hello,

I agree completely with anotherbpimom. My husband is "hell bent" on getting my daughter the limb lengthing surgery but I feel that it is a decision that she should make since she is the one that will have to go through the surgery. She has a lot of surgeries ahead of her and I feel that she should be able to make a choice whether she wants to go through it or not.
My daughters arm is already about 2inches shorter at 14 months. I have also heard that it is very painful.