Any parents who's child have had SDR surgery?

[remonb]

Hi,

My daughter is currently scheduled for a preop to have selective dorsal rhizotomy (SDR) done at Duke. Just wondering are there any other parents out there who has a child that has went through the same thing. I have tried to do as much research as possible about the surgery but I would also like to hear some parents experiences with it. I have been going back and forth on whether we should go through with or not. I just know it will be a long recovery for her but I also want to do what's best and to try every option that is available to give her somewhat an independent life. I don't want to look back and wish I would have given this a try.

She is about to be six on Monday and has been diagnosed with spastic diplegic. Has had 5.5 years of PT, OT, once a week and 3 years of botox. She's also and had orthopedic surgery to release some of the tension in the hamstrings and abductors. We were going to try the therasuit method before we did any surgery but her orthopedic surgeon thought that she would not benefit from it all and because her hips were a little out of the socket.She currently gets around via a wheelchair. Thanks

[askew]

I did a quick search and someone mentioned their child having that procedure in this thread. Perhaps you can PM them. Good luck with the surgery!

[BJMing]

Hi,

My son (2.5 years old) has CPSD and has been and independent walker since he was 20 months old. He just had SDR at the St. Louis Children's Hospital about a month ago. We did a lot of research and felt that it was the right move for him. I don't see a lot of difference in his movement as yet, but I'm told that it takes time to help strengthen the kids post surgery. Feel free to ask me any questions. I'll try my best to answer them!

Ming

[littlerockbabe]

sdr

hi my son had sdr in st. louis, march 2010, just last month. his surgery went well, and he is recovering so well too. it is a long process though, and a lot of pt is still needed. how did your son's surgery go?

[BJMing]

Your son had his surgery just a month after mine! How old is he? How is he doing? The first month is the worst since they are so week. My son is pretty much fully recovered from the surgery but quite honestly we have not seen any difference in his gait or function. He has a very very weak trunk and in hindsight, I think that was a bigger problem than his spastic legs.

Have you seen any difference in your son?