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Old 05-17-2019, 04:40 PM
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Smile How long...


I don't want to hijack Bigman's thread about his recovery so I thought I'd start one for everybody. So, feel free to post how long you've been seizure free since surgery. for me it's been 2 months now
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Old 05-17-2019, 06:29 PM
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I was 2 years seizure free after my surgery then the seizures returned. It was just after I was taken off Tegretol so I'm thinking my brain didnt like only being on 1 med.
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Old 05-18-2019, 08:24 AM
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About 9 years, though I had what I would call a handful of tiny "blips" about 4 years ago and I upped my medication.
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Old 05-19-2019, 02:57 PM
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I've just passed the 2 year marker, can't believe how quickly time has flown!, but I've been seizure free since.

I'm still on keppra and lamotrigine, I did question my Neurologist when I'd be able to get taken off them. He mentioned keppra, and I'm also booked in to see the neurosurgeon to give him an update next month, so I'll question him regarding the medications.

It's SCARY to hear people talk about going this long, then having their seizures return. I really don't know how I'd cope with that.
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Old 05-20-2019, 02:01 AM
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Very happy to hear where others have had a plus with their surgery, and sorry CQ the seizure world slipped back (congrats for a couple years.) My first surgery was the remove AVM which was believed to be the cause of my seizures. May have been the start in my epilepsy world but didn’t, get me seizure free. Seizures slowly got worse to the point it was control of my life based of periods I could have full control of brain use. So I was sent back in for surgery two, then within a month to seizure party number 3. After the third surgery they were worried large chunk of memory was going to be lost and that I would no longer be able th speak. They were too nice trying to make life a bit nicer but alas, didn’ Work other that seizures not as strong and often periods of a couple months seizure free. Few years later they started being worse again, the neurologist said he’d like to go back for another surgery; my reply there was no, get me better drugs. That’s where I live today, carbamazepine and my second drug many tries until lamotrigine. Frees me now of relatively minor seizures three weeks or so.

Always so nice to hear where others get free from seizures, very nice. Even when seizures are dropped in a good way, that is a plus. Fingers crossed for all to better life, be it seizure free or much milder.

Sorry if my wording is off...
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Old 05-20-2019, 03:48 AM
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Originally Posted by cadsgj View Post:
Very happy to hear where others have had a plus with their surgery, and sorry CQ the seizure world slipped back (congrats for a couple years.).
Thanks Cadsji
My surgery was in 2011 and the seizures returned in 2013 not long after I was taken off tegretol. I always knew there was a chance they could return and the surgery wasnít a cure. Only thing I had to adjust to was how the seizures changed after surgery, still having partials just different to how they were before.

I donít take my epilepsy for granted and every day seizure free is a good day.
At this stage my neurologist is still working with meds to control the seizures and hadnít discussed a 2nd surgery.
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Old 05-20-2019, 07:25 AM
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Apologies -- I just realized this thread is about being seizure-free since surgery (I haven't had surgery). best of luck for those pre- or post- surgery...
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