So my question to you regarding the RNS surgery, “was it worth it?”, is still a mystery. After the implant was activated a month ago, my seizures automatically reduced in frequency. Unfortunately that lasted 2 weeks and now I’m worse than I was before the surgery. I’m having many auras each day (originally I’d have approximately 1 on a seizure day and now around 10 each day), and seizures almost every day of the week. Because of this I went back to my doctor who is wondering if the device is in the right spot. What? After that surgery, it’s possible it was put in the wrong area? Please say no to that, because just a month later I’m starting to regret this decision. I realize it takes a lot of time to alter the device, but the look on my doctors face when looking at my results scared the hell out of me! Any other RNS patients who’ve dealt with the same thing?
Last month, April 2018, I had epilepsy surgery. My seizures are focused in my occipital lobe (the area which affects vision), which is a rare location for epilepsy and potentially dangerous for surgical resection (where they remove a part of the brain). My doctor suggested that instead of resection, they would try to implant the RNS device. He gave me an approximate 50% chance that they would even be able to find a safe place to insert it. The idea of brain surgery alone scared me but with only a 50% chance they’d be able to do ANYthing drove me nuts!
The first surgery involved inserting the intracranial electrodes on my scull for brain mapping. My doctors said that I had more electrodes inserted than almost all other surgeries they had done. I was miserable. I couldn’t eat, drink, talk, watch tv, read. For 7 days I laid in bed without moving. Due to potential seizures, I was restrained on the bed with my wrists tied down.
Thankfully, enough information was obtained from my mapping which gave the doctors confidence in a safe location for my implant. During the second surgery, the grids were removed and the RNS was implanted. Surprisingly, I recovered from the second surgery very well and was up, eating and talking very well within 24 hours. I was in the hospital for approximately 10 days total and the first 7 were the worst. Was it worth it? We’ll have to see….