United Brachial Plexus Network, Inc.

Hi my name is Linda and my son Connor who is seven years old has a brachial plexus injury which affects his left arm. He has had several surgeries some at TCH and some at Pittsburgh Childrens Hospital. The Doctors at TCH have told me that his next surgery should be the Gracilles Free Muscle Tendon Transfer. I have been trying endlessly to find someone whose child has had this surgery. The only person I have found was on a website, but her experience was not good. I would appreciate any information or input on this. The girls at TCH told me that they gave my name and number to families that have experienced this surgery and I have not received any phone calls. And this was a couple months ago. This surgery is very intense and I am just unable to make the decision on this without any information. Any suggestions are greatly appreciated.

Linda Swetof
Lndabelle2@aol.com

Hi Linda, I'm Anne. Sorry, I don't have any info to give you yet, my son Ben (3) is going to have it next week at Cincinnati Children's in Ohio. The only thing I can tell you is, yes, it's a hard decision, but in our case, we feel it's the best bet for our son. He's just not gained/ing any bicep. I'll let you know anything I can afterwards. Hope that helps, if you want, you can email me aadkins1680@earthlink.net

Anne

Anne, I guess I didn't realize Ben's surgery was coming so soon. Best wishes and prayers on that. How do you like CCH so far? They are so much closer to us but taking that step to change is just so hard. Plus I am not unhappy with where we go now. Katie too will have the gracillis transfer but it will be later and used for her wrist and fingers. I pray every day to see some new movement and work her like a horse but in the dark the reality always slaps me in the face that another day went by and nothing happened. This surgery is just such a biggie. She could use the biceps too-heck she needs triceps too if were gonna be hoping for anything! It is all "there" just so weak and atrophied. I dread winter coming with the long sleeves again. Sometimes I wish we lived in a constant warm climate so no one would stare at the difference when they see one sleeve rolled up over her hand and the other one fitting normally. BTW Dear doc, did you have another lovely day with your kids? Bet you didn't have to hold them down for their exam and therapy today like we did. I really really dislike evaluation days.

well, I managed to ramble on that one, so easy to do. I just wanted to wish Ben much success and as painfree a recovery as he can get.

Hi Linda,
This is a big surgery, from what I hear, and it's great that you've posted to find out as much as you can about it and the outcome post surgery. I hope you hear from those who've been down this road before you, even if it's just to tell you about their thought process and why they decided to go through with it or not. Cathy

Christy, thanks for the prayers. I love CCH!! I'm very pleased with the staff there. I think they are right for us at this point in Ben's life. To be honest, the change wasn't that hard, you know how sometimes things just click? That's how it was for us with CCH. I'll keep Katie in my prayers. We'll still be facing a surgery for Ben's hand someday in the future, but right now, that's where he's showing some improvement, finally. I feel the fact that his hand, triceps and wrist coming back as well as they have are in large part due to his PT's, since he's been with them, he's made some huge strides, of course they were an inch at a time, but we're finally starting to see them. Just took time, Ben's 2yrs out of ModQuad. Just keep working and I'll keep praying {{{Christy}}}

My daughter Kelsey is having the gracillis transfer in January. She will be 7. After talking with Dr. Klebuc at TCH, we feel this is the best option for her to ever be able to have a helping hand. Kelsey only has thumb movement side to side and can bring her middle finger in just a fraction. If she puts something in her left hand she rests it between her fingers. Although this is major, we feel it is necessary. We chose January so that by spring she will be able to be outside and active. She will miss 2 weeks of school, and be out of PE for 8 weeks.

Anne--he doesn't receive his therapies at CCH as well, right? I was thinking you maybe lived farther up north and traveled there a few hours. Thanks for the prayers too. I would really like to "visit" with them just to see how things click for us as well. But as we all know, we trust very little after this injury and that is one huge step. Keep me posted please so that I will know how you and Ben are doing and how things are going with CCH as well--this will be his first with them right? Katie is 27 months post mod and 21 months post caps. We are still having problems with the post mod scapula sticking but the caps looks fairly decent. Just everything is so so weak. Glad to hear Ben is getting that needed improvement in his wrist and hand.

Christy- we do live up north of Cincy. He has a PT here, he's worked with Ben since he came out of the ModQuad splint, earlier if you count the fact he was the PT in the hospital where Ben was born. Yes, this will be his first surgery with them. I will definately keep everyone updated.

katie too has been in therapy a long time--she started with (blessings blessing here) an OT that her pet project was OBPI kids. She went on maternal sabbatical just as Katie was coming out of primary and we have been with the same OT and PT since then (five months). They are part of our family now, katie calls them her "people". Of course I am one of her people too. Has Ben done any e-stim at all? TCH has wanted katie on it for awhile now but she is yet to tolerate it. Shoot, we're lucky to get her to hold the massager we are trying to work her into. If only she weren't so--extreme perhaps? She is a little hard to handle when she doesn't want to be involved in something or with someone.

Extreme, lol, in Ben's case that's a nice way to put it. If he doesn't want to do it, he'll let you (and anyone within a 5 mile radius) know. Plus you gotta be ready to duck. The PT's do use E-Stim on him, TENS I think and we have a unit here at the house. It's easier to let them do it, lol. They've found by letting him control it(when they use the big machine), he'll sit forever, just have to watch he doesn't turn it up too high. We've got an OT at our local hospital that will work with him after this surgery, but the PT wants him to go to one that's out of town, I just can't afford that, so I'm going to get their number from him and try for a once a month, work with the OT here kinda thing.