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Have you had experience with a hemispherectomy for epilepsy?
Hi! I am Patricia and my 7 years old son had epilepsy surgery at Mayo Clinic in February 2017. He had left hemispherotomy and he was doing great until May.
Then we discovered from a MRI that he was having a brain hemorrhage and he was feeling dizzy and weak.
We are from Brazil, so we returned to United States to try to fix that.
Fortunately it stopped bleeding and he didn’t need another surgery.
Now his dizziness is happening daily in some weeks, and he loses his eyes control, and although he is aware , the doctors said us it maybe seizure again.
I am so scared ! I really expected that with this surgery he would be seizures free forever.
Do anybody have this surgery and is doing good ?
Sorry about my poor English!
With best wishes
Patricia
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Hi Patricia. My name is Anna and my daughter Tashiya turning 18 tommorow is epileptic and at the moment considering surgery as advised the her doctor. She will need to have a left hemispherotomy done. At the moment it seems like the fits have stopped or rather happening once every two weeks however her speech functions and processing of information and memory is very much affected. I am at the cross point to decide on whether to have the surgery done or not. Sorry I could not help you out here.
I was never told to have surgery, have had grand mals whole life ,but besides some bad grand mals and a lot of side effects im now 63 ,as long as i dont haveany major troubles that threaten my life i will shy away from brain surgery,
Hi Anna! We choose the surgery when the doctors had told us he would have a brain damage because of his seizures... we so tried to keep him safe... it was not an easy decision... but I hope we have done the right thing for his future!
We really hope your daughter will be fine and healthy! Best wishes!
How is your son doing, @patrassi ?
Thank you so much. My daughter's functions keep on deminishing. She is now weaker on the right side from face to toe. For the past three days the seizures increased and a lot of saliva coming out even when she is not having a seizure. Her speech is affected. I have taken her out of school. I have now decided for surgery but want to consult with Mayo Clinic. Difficult to decide which one to choose. Kindly advice
Hi@colleenyoug !
My son is fine nowadays, his dizziness and weakness is giving him a break... it’s happening once a week for while....we are hopeful and trusting in a better future! In February we are going to Mayo Clinic for an appointment and new tests. Thank you for your attention!
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1 ReactionWe have decided for Mayo Clinic after long research and we think it was the best choice for us . He had surgery with Dr Nicholas Wetjen , a great surgeon !
He also have gone to Dr Lily Wong that is so Kind , she is Neuro Clinic.
My son have weakness on his right side too ... but we can do physical therapy and it could help him ... after surgery it became worst for a short period and now he is doing better...but his activities as OT and speech therapy are daily. His seizures as he had before surgery doesn’t happen anymore... until now. He had some dizziness, lost his eyes control eventually, but not the classic seizure...
the only permanent problem with this surgery was that he lost his side vision on the right...
But we are happy and trying to get over it!
Really hope I am helping you! Be sure I am right here for you and your daughter! You can answer me any questions and doubts. With love ❤️
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