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I am having a stereo eeg and probably rns. Does anyone have experiences with these surgeries?
@A MyEpilepsyTeam Member
Like I said after I had the SEEG surgery I later got the Neurostimulator (RNS). All of the EEG’s I had I either had little to no seizures so they were a waste. At least the RNS not only helps control your seizures but it also records your brain activity 24/7. Any time I have a seizure or an aura someone will touch my head with a magnet 🧲. That will highlight that specific spot for my doctors to see. Before I go to bed every night I turn on the RNS monitor 💻 and place a wand on my head where the RNS is located. It will take maybe a minute for the monitor to download any seizure activity. When the monitor is finished downloading I hit “Send” and all of the information goes to my doctors and neurologist. When I go see my Neurologist and the RNS doctors they get out a monitor of their own and can see everywhere I had a seizure and everywhere the magnet was used. Most of the lines on the screen are level but when they go to a spot where I had a seizure the lines get really bouncy ———wwwwww——. The doctors write down any important information. Since I continued to have seizures the doctors raised the watts several times. To do that they just placed a wand on my head and made some adjustments on their computer. I never felt any vibrations or anything else. After so many years the battery will die in the RNS and need to be replaced. That was just an outpatient procedure where I got to go home afterwards so it wasn’t a big deal. I usually have 1 or 2 seizures per month so I didn’t really see a decrease in my seizures but if you have more seizures you could see a bigger improvement. I pray this all makes you seizure free.
@A MyEpilepsyTeam Member
I have had both of those surgeries. The SEEG (Stereo EEG) gathers more information than the EEG because doctors drilled holes in my head and put the wires directly into my brain. That gave the doctors a high definition EEG where they gathered more information as well as more accurate information. I couldn’t really even tell that the holes and wires were in my head so it just felt like there was weight on my head. During the SEEG I was not allowed to get out of bed for a few days, then I was allowed to lay in bed or sit in a chair for a few days, they both had alarms if I were to stand up. Finally after 4 or 5 days I was able to stand up and walk with a nurse by my side. Like you said after I had the SEEG I then got the RNS (Neurostimulator).
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