HELP!!!! WE ARE SCHEDULED FOR A GRACILIS MUSCLE TRANSFER IN HOUSTON, AT TEXAS CHILDREN'S WITH DR. KLEBUC AND DR. SHENAQ. WE ARE HAVING A DIFFICULT TIME GETTING POST-OP PHOTOS, AND ANY PHONE CALLS FROM PARENTS WHO HAVE BEEN THROUGH THIS WITH THEIR CHILDREN.
WE WOULD LIKE TO HAVE THIS INFORMATION BEFORE SURGERY, OR WE WILL CONSIDER POSTPONING IT. PLEASE......IF ANY OF YOU OUT THERE CAN GIVE SOME DIRECTION, PLEASE GUIDE ME IN THE RIGHT WAY.
OUR SURGERY IS SCHEDULED JUNE 17, 2002.
P.S.~WE HAVE HAD 5 PREVIOUS SURGERIES IN HOUSTON, AND THIS IS THE FIRST TIME WE HAVE HAD SO MUSCH DIFFICULTY GETTING ANYTHING FROM THEM.
HAS ANYONE ELSE EXPERIENCED THIS KIND OF DELAY?
THANK YOU~
PAM SCARPINO
psenjoylife@prodigy.net
GRACILIS MUSCLE TRANSFER
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admin
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Re: GRACILIS MUSCLE TRANSFER
Hi,
I was just wondering what type of surgery "gracilis muscle transfer" is? And what type of movement your child will gain by doing this surgery? Thanks
Dawn
I was just wondering what type of surgery "gracilis muscle transfer" is? And what type of movement your child will gain by doing this surgery? Thanks
Dawn
Re: GRACILIS MUSCLE TRANSFER
Well what you are experiencing is a delay of getting information from other parents...and maybe TCH doesn't have pictures from families or followups yet. This surgery is a difficult one and followup at home is difficult as well. I can understand why the families may not have the time to do photos and all.
Ivellise Morales's daughter Jocey had this surgery a while back. I will give her your email. I'm not sure if she's in the states now - sometimes they travel back home to Puerto rico...but I will email her nonetheless.
Also - NancyP from here is contemplating this surgery for her daughter also and she has information about it. I'll try to email her as well.
Maybe you can get a phone call conference with Dr. Klebuc?
Wish I had more to give you.... I am working on a web page with Ivelisse but it's not done yet. As soon as it is done I'll let you know.
-francine
Ivellise Morales's daughter Jocey had this surgery a while back. I will give her your email. I'm not sure if she's in the states now - sometimes they travel back home to Puerto rico...but I will email her nonetheless.
Also - NancyP from here is contemplating this surgery for her daughter also and she has information about it. I'll try to email her as well.
Maybe you can get a phone call conference with Dr. Klebuc?
Wish I had more to give you.... I am working on a web page with Ivelisse but it's not done yet. As soon as it is done I'll let you know.
-francine
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Jocelisse's Parents
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Re: GRACILIS MUSCLE TRANSFER
Hi Pam
I will be glad to answer all your questions. Sorry for do not check the board too soon. Thanks to Francine's email I got the info about your concern. I has been really busy because we have been doing sales of home stuff and also we put the house in Houston for sale we will move to Orlando,Fl. Jocey will have her last surgery into a week June 3 and this has been a very busy month.
Jocey had the gracilis muscle transfer January 21 and 10 days after the muscle transfer she started to move her fingers. I will give you more details if you call me I has been packing and organizing all the home stuff. My phone number is 281 861 9313. I never received emails from you be sure if Dr. Klebuc tell to you about us I will contact you and answer all your questions. I'm available to any body who need help. Call me and I will give you all the details. You could see Jocey photos contact Francine and she could send a copy to you she have Jocey's Photos. I want to aware you the photos are hard when you view them. Thanks,
Ivelisse
I will be glad to answer all your questions. Sorry for do not check the board too soon. Thanks to Francine's email I got the info about your concern. I has been really busy because we have been doing sales of home stuff and also we put the house in Houston for sale we will move to Orlando,Fl. Jocey will have her last surgery into a week June 3 and this has been a very busy month.
Jocey had the gracilis muscle transfer January 21 and 10 days after the muscle transfer she started to move her fingers. I will give you more details if you call me I has been packing and organizing all the home stuff. My phone number is 281 861 9313. I never received emails from you be sure if Dr. Klebuc tell to you about us I will contact you and answer all your questions. I'm available to any body who need help. Call me and I will give you all the details. You could see Jocey photos contact Francine and she could send a copy to you she have Jocey's Photos. I want to aware you the photos are hard when you view them. Thanks,
Ivelisse
Re: GRACILIS MUSCLE TRANSFER
Pam- I have pictures and text and will put the page up tonight if I can.
-francine
-francine
Re: GRACILIS MUSCLE TRANSFER
Pam - did you get to see the page yet?
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NancyP
Re: GRACILIS MUSCLE TRANSFER
Thanks Ivaleise and Francine for the page. Kelsey will have this surgery in the next year or two. We are not pushing it to have this done any time soon, as Kelsey is not mature enough yet to be still. We also have the possibility to have an intercostal nerve graft done before the gracilis. Pam-Dr. Klebuc is a wonderful man. He came into Kelsey's room at TCH when we were there for surgery in April. It was after 8:30 at night, and he stayed a great deal of time explaining and answering my questions. He was very caring and interested in what Kelsey could and couldn't do. He also explained everything in great detail so that I could understand and discuss it intelligently with my husband. I really believe that if you call him, he will answer your questions. But...by all means, don't do something you are not comfortable with! It is going to be very stressful as it is.
Good luck!
Nancy
Good luck!
Nancy