United Brachial Plexus Network, Inc.

I'm new to this site, but wishing I had visited here when my son was born! Andrew is 3 yrs. old now and has a right OBPI. We have seen Dr. Kozin at Shriners since he was 3 months. Dr. Kozin did botox injections at 18 months, and he is now recommending the tendon transfer surgery. Andrew's most recent MRI is showing his "ball and socket" are out of alignment. Dr. Kozin has recommended the tendon transfers to correct this problem. I'm looking for anyone who has had this surgery to see whether the benefits outweigh the negatives. Right now Andrew is fully functional. His Mallet score is 17-18. His OT is telling me he will get worse if he doesn't have the surgery. Can anyone comment on whether they had the surgery and did it help? Did you sacrifice one area of mobility for another? If you had it to do over again, would you? Has anyone chosen NOT to do surgery? If so, how has their OBPI progressed? Thanks for your help!

Hello,
I'm sorry I cannot help you with the tendon transfer surgery. However, at 3 years old I had the mod quad surgery done at Children's Hospital in Texas. My parents made the best decision they could based on the information they had at the time. I've seen a few doctors that are not too fond of the surgery anymore. They've said that it takes away other functions. However, other doctors are still doing it.
I think with any surgery it just depends on the person's injury. No two people will get the same results, just similar ones. Research. Research. Research. That's the best advice I can give. I wish I could help more!

I pray for the best for you
~Sarah

My understanding is, the way TCH and others used to do the Mod Quad surgery, it did not prevent the ball and socket from growing out of joint, and it did not correct a joint which was already malformed. I believe Dr. Kozin still does an arthroscopic form of capsule release along with the tendon transfer (or by itself) in order to induce the shoulder joint to grown back into alignment.

Our son had a severely malforming shoulder and had his shoulder capsule released at 14 months old. While he did give up some internal rotation functionality with the surgery, I still am glad he had the procedure. It was the best knowledge available at the time, and he might have lost more internal rotation than necessary. Dr. Kozin has learned a lot since then about which kids need how much released for the best outcome. Out son has a normally forming shoulder joint and has gradually gotten his internal rotation mostly back (without losing his external range). He has nearly 100% function with the exception that his overhead range is limited to about 100 degrees. That seems to be limited by his deltoid recovery, which has been poor in general. Even when he was very very internally rotated as a child, he never had much of a trumpet sign. That is what it is called when a child with extreme internal rotation elevates their elbow to get their hand to their mouth. Our son could never do that. It's possible that a tendon transfer could help him with that, but I'm not willing to risk losing more internal rotation. He's functional, and can even do a reasonable throw-in in soccer (now that he's practiced it a ton!). There are other, new surgeries that might be a better option for him, but as he has good function now, and a normally forming joint, so we are choosing to wait until more long-term results are in on them. I'm pretty darned conservative when it comes to surgery.

However, when the formation of his joint was in danger, we were very aggressive. That is something that is best taken care of when the child is young and has lots of growth left. I believe that if the shoulder joint is allowed to grow malformed, eventually that malformation will cause problems, either by causing instability or pain, or arthritis as the child ages. I know Dr. Kozin has learned a lot since 2004 (when my son had surgery) and I would trust his judgment if he says your son's shoulder is growing out of alignment and it requires surgery. Even if something better comes along in a few years (hopefully procedures will continue to improve) that is a few years of the shoulder growing in the wrong direction, and I personally wasn't willing to risk that.

Kate