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@A MyEpilepsyTeam Member thats how my epileptoligist explained it to me, maybe because i have 2 kinds?
@A MyEpilepsyTeam Member
I have had the RNS for several years. I still have some seizures but the main reason I chose to get the RNS is because it records my brain activity 24/7. I had several surgical EEGs but I never had any big seizures for the doctors to see so they were a waste. Now the RNS covers me everyday. Whenever I do have a seizure my mom will touch my head with a magnet and that will highlight the spot a seizure occurred. Every night I turn on the RNS monitor and place a wand on my head. It will download any information of the day. When it’s finished I hit send and all of the information is sent to my doctors. When I go see my doctors they look at their monitor and see everywhere I had a seizure and everywhere the magnet was used. I also use the magnet to mark an aura. Most of the lines are straight but when we go to a spot I had a seizure the lines get really bouncy ———wwwww——-. They save the information. Since I have continued to have seizures the doctors have turned up the watts several times. To do that they just place a wand on my head and do some adjusting on their computer. I never feel any vibrations.
@A MyEpilepsyTeam Member
I once had the VNS and I‘ve never known when a seizure is coming. It went off every 5 minutes to help stop seizures from occurring. When I had a seizure someone would touch my chest with a magnet and it was supposed to wake me back up. However it did me no good so I had another surgery getting it removed. Now I have the RNS. Right above is all the info.
@A MyEpilepsyTeam Member , Our team member @A MyEpilepsyTeam Member has the RNS & can share his experience with you. Your friend in Texas, Becky
I have an appointment to go see an epileptologist March 29 to talk about the RNS. He's already said that I'm not a candidate for VNS because I have no aura before my seizures. I have refractory epilepsy and have found no meds that have worked to control my tonic clonic seizures, even taking the cocktail that I'm on now. I'm still having them about twice a month. My neurologist referred me to the epileptologist last year so I have to travel to see him. It's hard, but worth it.
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