Has anyone had a temporal lobectomy, if so how soon were you able to wean off your meds and how was the process. My dr told me 2 years seizure free. My surgery was in July of last year so I've still got almost a year, but I'm having a lot of trouble with pharmacies and feel like it would be better to wean off early than to potentially go without them all of the sudden. I would like some opinions on this.
I had brain surgery on my left temporal lobe in 1998 . It help reduce my seizures frequency down to mild and moderate seizures. I haven’t been able to wean down on my doses more amount of meds. .
Since we all are different, with the types of Epilepsy, kinds of seizures, and activities in different parts of the brain, we all get different results. Some of us may become seizure free, some of us may have less seizures. Everyone have different results with any type of treatment. There are many, who have no trouble controlling their seizures with minimal amount of meds , then there are others who struggle finding meds to control the seizures.
So for myself , I have never weaned down on my meds, unless I was changing to a different medication. I’m on 5 different meds and they still don’t control my seizures 100%.
I had my temporal lobectomy in December of 2000. I was on three meds and went off the first one six months after surgery, the next one six months after that and the last med 4 1/2 years after that by my choice. I'm doing fine - 21 years seizure-free.
I’m the opposite. I couldnt do a second if I wanted. Although Im going to do the DBS ( deep Brain Stimulator ) surgery. Hopefully this will help more.
@A MyEpilepsyTeam Member. My Nero Surgeon says we could still remove more. Having done it once and being scared whitless at the time I would actually do it again now knowing what to expect.
We never share your personal information with anyone.