Does Anyone Have Experience With The RNS Device? My Brother Has It Implanted And Is Doing Terrible With It. | MyEpilepsyTeam

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Does Anyone Have Experience With The RNS Device? My Brother Has It Implanted And Is Doing Terrible With It.
A MyEpilepsyTeam Member asked a question 💭

He's having crazier ,strange seizures . His medication was supposed to decrease ,it's been played with and increased instead. His seizures are bizarre ,I'm sorry ,there's no other word to describe them. I'm His only care taker and it's scary. Should we get the device turned off?

posted June 14, 2023
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A MyEpilepsyTeam Member

Hi @A MyEpilepsyTeam Member , You can reach out to @A MyEpilepsyTeam Member cause he has the RNS & he can tell you his experience with it. @A MyEpilepsyTeam Member had surgery & I think he said he’s gone 10 years without a seizure & @A MyEpilepsyTeam Member also had surgery & hasn’t had any seizures. I pray your brother’s seizures calm down. Welcome to the site. Your friend in Texas, Becky

posted June 14, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I have had the RNS for 4 or 5 years. My medication never decreased. Doctors have adjusted the power multiple times which never caused me any harm. I wouldn’t have the device shut off because the doctors are gathering information on his seizures.
I also believe my seizures have calmed down with the RNS. I pray his seizures settle down.

posted June 14, 2023
A MyEpilepsyTeam Member

Hi TraciVogt, I had a VNS and it was full of problems. I had a Left Fronto Temporal Parietal Craniotomy for Left Temporal Lobectomy, Hippocampectomy. My last seizure was in December of 2011. I still take Lacosamide, (generic Vimpat) twice daily. Good luck with you and your brother.

posted June 14, 2023
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