@A MyEpilepsyTeam Member
I forgot to put this photo.

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A MyEpile...

Good information @A MyEpilepsyTeam Member, I am considering the RNS myself. I have the VNS, so I know there are some side effects, but it’s an easy procedure. I’ve had the VNS for three years, it makes my voice scratchy, but I’m still at 50-75 percent battery life.

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A MyEpile...

@A MyEpilepsyTeam Member
I have had the RNS-Neurostimulator for 4 years or so. Before I had the RNS I had to have so many EEG’s, including a surgical one, where I didn’t have any big seizures so they were all a waste. The RNS not only helps reduce seizures but it also records my brain activity everyday. Whenever I have a seizure my mom will get a magnet 🧲 and touch my head where the RNS is. That will highlight that spot for my doctors to take a closer look at. Before I go to bed every night I turn on the RNS monitor 💻 and place a wand on my head. It will take a minute or 2 to download any seizure information onto the RNS. When it’s complete I hit “Send” and all of the information goes to my doctors. When I go see the RNS team they get out their computer and can see everywhere I had a seizure and everywhere I used the magnet. Most of the lines on the computer are smooth but when they go to a spot I had a seizure the lines get bouncy ———wwwwwww———. The doctors will write down whatever information. Since I still have some seizures the doctors have risen the amps several times. To do that they just put a wand on my head and do some adjusting on their computer. I never feel any vibrations or anything else. Every 7 or 8 years I’ll have to have an outpatient procedure to replace the battery. I already did that once with the old RNS. It wasn’t bad. It was just an outpatient procedure.

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A MyEpile...

I’m thinking hard about getting the RNS, @A MyEpilepsyTeam Member.

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A MyEpile...