... daughter (29) had left temporal lobe surgery 1 year ago. She is still having close to 300 simple seizures and about 5 complex and 5 generalized per month. The surgeon has suggested a second surgery to try and reduce them but the neurologist is leary as he feel the seizures were developmental and start deep in the brain. She has tried numerous trial drugs. Currently on a combination of 4 drugs - tegertol, lamictal, topimax and vimpat. She began with occassional nocturnal seizures at age 11 and 4 years ago evertyhing went out of control so that she now has day and night seizures and clusters when she tries to sleep. Can anyone share their experiences? Thanks
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Dear Roxy Poxy,went to USF college here in the state of Fl and had surgey my self done by a very good docter DR VALA.Sounds like what your daughter has is a rare seizure disorder,is in which what they found in me.I was given 2 surgeys to deside on,know my memory and that is already bad they said when from my seizures when i did testings from last december and was told it could get better but it not.I took the first surgey it was 60 0/0 chance no seizures and better chance of a not having a worse memory,that surgey was left temporal lobe tip rection.If that don't work i can go back for a left temporal lobe resection but there is a 80 0/0 chance of memory loss,every body is defferent it covers seizures up to 80 90 0/0.Think real hard before you do what you decide but god will make it better after the surgey and i will pray for daughter if you if have a anther one.
my epilepsy started at age 8. have had three brain surgerys to remove cavernous hemangeoma tumors and i still have the seizures. i have been on tegretol xr and lamictal over the years and it has seemed to control my seizures for the most part except for during pregnancies. the first pregnancy i was taken off the tegretol xr and moved solely to the lamictol which got really high. i had grand mal seizures in the middle of the night in my sleep and had to be induced early for the babys safety, second pregnancy i was left on both meds and had no problems at all, and the third im only on the tegretol xr and am at 1100 mg of it a day. have been haveing partial to full grand mals in the afternoons mainly. doubt this is much help, however it does help to know that you arent alone in this disease.
I Had seizure surgery 8 years ago and was fine for 5 years. The seizures returned again two years ago, worse then before the last surgery. I've tried a number of meds, each lasts about 4 Months and the seizures begin again. Neurologist started a round of tests and if eligible I'll go for another surgery. Anything is better then waking up in the hospital after having a seizure. Last year I woke up with kidney failure after a seizure and was on dialysis for ten weeks. For myself I would take the chance.
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