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Share your experience. He is been a very dificult case to manage with meds.
Sean, thanks for the quick response. How long was the recovery and when does the adjustment process begin?
@A MyEpilepsyTeam Member
XCopri sounds familiar so I do believe I was taking that medication at one time. Whenever I started taking any new medication I seemed to start out good but then I would always start having more seizures again. But being drug resistant to epilepsy it’s hard to say
@A MyEpilepsyTeam Member
I believe the recovery time from the RNS surgery was 6 to 8 weeks. It wasn’t very long before they started raising the watts on the RNS either. I would still have appointments with my neurologist but she can’t do anything with the RNS. I’d say every other time I saw my neurologist the RNS doctors would be there too to look over my seizures and keep slowly turning the watts up on the RNS.
Sean, they started a new med call xcopri, we notice although it does not fully stop the seizurs we notice a significant change and improve his cognitive, he is alert and more aware on the episodes so he express what he feels. He never was able to express and do not remember
@A MyEpilepsyTeam Member
I have had drug resistant epilepsy for over 30 years and have experience with the Neurostimulator (RNS). I first kept getting one EEG after another, including a SEEG, where I would have no seizures so they’d just be a waste of time. That’s when I chose to get the RNS. The RNS not only helps control your seizures but it also records your brain activity 24/7. When I had a seizure or aura my mom would touch my head with a magnet and that would mark that spot important. Before I went to bed every night I would turn on the RNS monitor and place a wand on my head. It would take a minute or two to download all of the information. When it was done I’d hit “Send” and all of the info would get sent to my doctors and neurologist. When I went and saw my neurologist and the RNS crew they would get out a monitor of their own and could see everywhere I had a seizure or used the magnet. Most lines on the screen were smooth but when they went to a spot I had a seizure the lines would get really bouncy ———wwwww———. The doctors would write down any important information. Since I continued to have seizures they raised the power on my RNS lots of times. To do that they just placed something on my head and made adjustments on their computer. I never felt any vibrations or anything else. I continue to have seizures but the RNS could work better for you. Good luck if you decide to get the RNS.
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