United Brachial Plexus Network

Okay this is kind of long --
My three year old has ROBPI. He had primary surgery around 7 months of age. He can move his fingers, grasp, has around 70 degrees shoulder abduction and from surgery has about 90 degrees elbow flexion. He still has full passive range of motion. As his elbow flexion is not enough to get his hand to his mouth, his primary surgery is considered to have been unsuccessful and his bicep function is referred to as trace bicep function. We were referred to the orthopedic surgeon who stated that he could perform a procedure called Steindler Flexorplasty, which would move the wrist flexors beneath the bicep. He may lose some elbow extension due to contracture from being in a cast for 6-10 weeks and the need for the tendon to be tight to bend the elbow. The surgeon stated that although he could do this procedure, he could not say that it would “matter” to my son; meaning essentially that my son still may not lift his right hand to his mouth even with the ability to do so. He stated that if we believe he has adapted that we might not want to do surgery but said it was primary in importance of function to any shoulder or hand surgery. My son has adapted well and the little elbow flexion he does have he uses to aide him in doing two-handed activities. I am struggling with making a decision on this procedure as he would have to flex his wrist in order to bend his elbow, he would potentially lose the ability to straighten his elbow and furthermore putting him through this kind of surgery, recovery, and being in a cast for 10 weeks when we don’t even know if he will use this function! And if we don’t choose this surgery then no shoulder or hand surgery! I really do not know what to do. How do and when do we know how much function is enough, when to stop, when to continue. As his mother I feel obligated to do as much as is available to get him all the function that he can have but I do realize there is nothing I can do to get him to 100%. Part of me want to just wait and let him decide later on when he is older and the other part of me wants to get everything out of the way so before he starts grade school. I just want him to be as independent as he can be and maintain his self-confidence. I would appreciate anyone who can relate his or her child’s experience with this procedure and/or delaying secondary surgeries.

It is always good to get a 2nd or 3rd opinion with a BPI Specialist., Mom. Then follow your Gut (sorry for the word but is the best word).

Carolyn J
LOBPI/75---sometimes Bossy

PS There is a List/Link of BPI Specialists on home page for "Medical Resources". Some of them Consult with a video of your child.