Guest guest Posted October 14, 2011 Report Share Posted October 14, 2011 Hello everyone. I wanted to give a short update on Mysha, my 14 year old. She had intractable seizures, and we finally decided to go forward with brain surgery following some test results that showed some losses that were not tolerable to us or her. She agreed to the surgery. We had the surgery on August 11 with Dr. Bingaman at the Cleveland Clinic. Dr. Wyllie is her epileptologist (and is AMAZING!!!!). Her surgery took about 8 hours. By the time she reached the PICU she was able to respond to commands, and even lift her right leg on command. She spoke about 2 hours later. The surgery we went with a functional hemispherectomy. We are now 2.5 months post op. We are on the final leg of a wean of Lamicatal, Vimpat is still in place at full dose. There have been NO seizures or seizure activity. There was a 24 hour EEG run about 3 days post surgery and NOTHING seizure like was in it. It has not been easy, but for us it was the right decision. Her speech was not affected, and she left the hospital 10 days after surgery and went into acute rehab. She was in acute rehab for 11 days. When she left she was able to walk independently (just like before, a bit slower), shower, dress herself, etc. She has some memory problems and impulse control issues (which she had before, but they seem a bit worse now). Those things are improving. She was back in school 1 month after the surgery, and it took about a week to get her going back full time. At school she now (for the first time) has a full time aid because she gets lost easily (it is also a brand new school / school district). Her grades are holding well, and we are using a lot of reminders and lists. Now that we are this far out I feel like I can talk about it more. If anyone has any questions please don't hesitate to ask. R. Holman PADI OWSI #193832 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 , That is really nice to hear, I can just tell how relieved you are! I know I would be. When Nisha had her new MRI it showed a new chiari malformation. It is very small but we are scheduled in refractory clinic in Nov to address both issues at Riley. Do you know how we can find out how good the doctor is? Her name is Jodi , I think she has been doing epilepsy surgery for awhile. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 Diane, I'd ask other doctors, ones that you trust. I'd also do some research -- like google her name. See if anything pops up. Ask and ask some more....... R. Holman PADI OWSI #193832 Subject: RE: Mysha Post Surgery Update To: " polymicrogyria " <polymicrogyria > Date: Monday, October 17, 2011, 8:54 AM , That is really nice to hear, I can just tell how relieved you are! I know I would be. When Nisha had her new MRI it showed a new chiari malformation. It is very small but we are scheduled in refractory clinic in Nov to address both issues at Riley. Do you know how we can find out how good the doctor is? Her name is Jodi , I think she has been doing epilepsy surgery for awhile. Diane ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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