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Hey all! This is my first time on here. I wish that I had made this venture a while back. My five year old daughter Blakely, is having a right side, functional hemispherectomy on Jan. 26. at the Cleveland Clinic. I do know a couple of other children that had this done, but was wondering if any one else had and advice as to what we need to expect after surgery for her recovery. I am nervous about the first bit of time after the procedure. We will not be dealing with any new impairments because she is already left-side hemi-paresis due to a stroke she had during my first trimester of pregnancy. The doctors have told us though that she will suffer greater weakness in her affected side, but with intensive therapy, within 6mths. she should be back to her capacity that she is now. I guess I am wondering about what the incision will look like, what do I need to watch for, and how to take care of her after this. The worst surgery we have been through with our girls is tonsils and adnoids! Thanks for a response!
Recent Comments on this Discussion
My 7 year olds doctor has suggested the same surgery. I am really nervous as she has had brain surgery previously to remove a tumor. I too would like to hear from any parents who had this surgery
My daughter has had this surgery for Rasmussen's. she was 3 when she had it, and 20 months later she is doing great. Please feel free to email me, and look on the yahoo groups for RS_hemispherectomies to find other families who have had this surgery. Kelly
Just wondering 3 months after surgery how Blakely is doing in her recovery? I am the father of a 12 year old who is likely going to require a right sided functional hemispherectomy in June. He has had intractable seizures since he was 22 months. The doctors have debated Rasmussen's since an MRS when he was four showed progressive brain atrophy on the right side. He developed hemi-parisis on his left side three years ago. They did a temporal lobectomy and his seizures have been less severe. The idea of something as radical as a hemispherectomy is scary but the literature shows very good results. Interested to hear your experience if you are willing to share.