I have a surgery question..

[christy]

Katie's recent video review resulted in us being told she will need work on her wrist and fingers in a few years. I don't like the thoughts of the gracilis transfer and am wondering if anyone knows of anything that is being done out there any earlier to help avoid it? I know I am grasping at straws but I keep thinking if we could get another nerve (or muscle)transfer lower towards the wrist and fingers to give them a little more juice than what they are getting now...or something along that line. She stays in neutral all the time and I know she needs some kind of range --If anyone has any ideas please share with us. We are going to try placing the electrodes to see if we can work her into e stim but I am not sure how well she will tolerate that, even the placement of let alone the actual modality. I would really like to not have her come to that particular surgery road, especially if there is something we can try before then to avoid it. Then if it didn't work and / or she doesn't improve by the time that move comes then I would know I had done everything possible. Sigh...guess we were getting complacent and just expecting more and more miracles. Forever hopeful lot aren't we! Does anyone have contact information for Jocey and Ivelese?

[Francine_Litz]

Christy - I will email you contact info for Ivelisse.

[christy]

thanks..I know we have plenty of time but I want to research all options and know exactly what we are in for before we get there.

[Julie]

Christy,

My daughter's wrist is pretty weak too. She holds it in the neutral position most of the time, but when she picks up anything larger than a small toy the wrist drops down. We have been doing NMES with BMR NT2000 on various muscles, one of them being on her forearm to work the extensors (on top of the arm). When we stim that spot her wrist extends some and her fingers open too. I don't know what kind of e-stim unit you have, but my daughter tolerates the BMR one very well. Our PT said it is definitely the "gentlest" one to use. Just before our daughter's recent caps surgery our PT also tried taping on top hand/wrist/forearm. It really showed promise so we will try it again after the splint comes off. Taping is alot less restricitve than a splint (we have used the Bendix neoprene one with a metal stay in it) and it "trains" the muscles to work in the proper position. We were told that my daughter wouldn't need surgery on her wrist but I am still very concerned about the lack of strength. I guess it will be another question for Dr. Nath this summer at camp! Let me know if you have any other questions.

[JaimeC]

I too have this concern...My son had caps in December, and we talked briefly about the gracilis then, but Dr. Nath also mentioned some tendon transfers in the hand in the future. We saw Dr. Klebuc in April to discuss the gracilis, and basically, he said my son has "too much" movement. Gracilis is mostly used for those kids who have no (or nearly no) hand movement or strength. My son has some, although it's "not functional". This REALLY discouraged me. I wasn't even sold on the gracilis surgery to begin with, but when he said he wouldn't consider it, at least not now, I was just deflated. He and Dr. Nath both said to work on strengthening what he has with therapy and e-stim, and check back in a year or so. My son is 7. So our goal has become to strengthen what we can with e-stim and therapy. I'm putting my hopes in e-stim. My son's hand and wrist are even weaker than before he had caps...so I guess the long road ahead never ends...I used to think there would be an end point to all this...the older he gets, the more I realize that's not true.

[christy]

we haven't set any type of estim up yet, that is one of the reasons I am asking lots of questions and we are just going to practice with "unplugged" electrodes to see and wait on her Dr's to decide (if she tolerates this) just exactly what we should use. I just keep hoping and watching but so far no change. in fact it seems like the wrist just gets weaker and weaker. We are also having to add more tx to strengthen the biceps and triceps (triceps just started kicking back in recently) Thanks everyone