Who Has Experience With The RNS Testing? I Am Concerned That The Device That Holds Your Head In Place Will Give Me Claustrophobia. | MyEpilepsyTeam

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Who Has Experience With The RNS Testing? I Am Concerned That The Device That Holds Your Head In Place Will Give Me Claustrophobia.
A MyEpilepsyTeam Member asked a question 💭

Wereyou able to take meds for it during the testing?

posted March 5
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
There was no device that held my head in place. I had a couple EEG’s before I got the RNS. I was taken off my meds during the EEG’s but when they inserted the RNS in my head I was able to take my medication.

posted March 5
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member , You can reach out to @A MyEpilepsyTeam Member because he has the RNS & he can share his experience with you. Your friend in Texas, Becky

posted March 5
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member you are such a font of information! When I was going for my stay in the EMU and didn't know what to expect you really put my mind at rest. It was no picnic and I was extremely nervous but somehow you made everything make sense. For that, I thank you 💜.

posted March 18
A MyEpilepsyTeam Member

Thank you for the information!

posted March 6
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I was in the hospital for about 1 week after the surgery. The procedure itself wasn’t very painful but it did hurt to rest my head on the side with the womb for a few weeks. Now I’ll never have to have another EEG again. That’s a big reason I chose to get the Neurostimulator (RNS). I had so many EEG’s, including a surgical one, where I didn’t have any big seizures so they were a waste. The RNS not only helps control your seizures but it also records your brain information 24/7. Whenever I have a seizure or aura my mom will touch my head with a magnet to mark that spot important for my doctors to find. 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 two to download any seizure activity for the day. When it’s finished I hit “Send” and all of the information is sent to my doctors. When I go see my neurologist and the RNS squad they get out their monitor and can see everywhere I had a seizure/aura and everywhere I marked with the magnet. Most of the lines on the screen are smooth but when they go to a spot I had a seizure the lines get bouncy ——-wwwwww——.
They write down whatever important information. Since I still have some seizures the doctors have risen the amps on my RNS multiple times. To do that they just place a wand on my head and do some adjusting on their monitor. I never feel any vibrations or other things.

posted March 5
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