United Brachial Plexus Network, Inc.

I wanted to check with anyone that has gone through the TT surgery. We were told in August that my son Matthew needs to have it. A real shocker since he seems to be doing well. He did have the mod quad in 2000. He'll be nine in Jan. and I guess I need some inside information on what to expect and reassurance of some kind ). I looked up this topic on the boards but there hadn't been a lot of discussion about it since a post about regression in Jan. 2007. I would really appreciate the experiences, what you've learned since then, etc. to help us make this decision.

Thanks a ton!

Sandy

Hi there,

Well, my son didn't need surgery until the TT when he was 4 -- which was exactly 1 year ago. I would say I was very nervous after we came out of the splint... at first our main concern was that he could not raise his arm very much at all. We LOVED seeing the supenation that he didn't have before -- that was the coolest. But, he was a little overly supinated, and that kinda freaked me out too. I will say as of today, I am SO happy we had the surgery. We have seen a HUGE improvement. With all the therapy ( aqua therapy especially) he now can raise his arm to at least what he had before surgery. His supenation is beautiful. His arm hangs nice and straight, moves better. It was SO worth it. We have splinted for a year -- at first it was 8 weeks/24/7...and, then just at night. I'm so proud of my son and all his hard work. It's been a journey, but all worth it. I would be happy to talk further with you -- if you want to email me directly -- april2123@yahoo.com Best of luck in your decision. April

Hi April,

Can you fill me in on what to expect for therapy? We don't have anyone around here who is a BPI specialist so I'm a bit nervous about the therapy end of this whole thing.

Thanks,

Sandy

PS If it works better, I can just email you directly if you want.

yes -- email me direct ! I can't believe you are so close! We can chat/ get together ...whatever works. april