With all of the data that Dr. White gathered during SEEG testing, I became a case study for the second time. Back on August 27th.
Yes, that’s how long ago I could have provided a legitimate update. Well, maybe August 28th, since that’s when I had an appointment with Dr. White to discuss the results of the surgical conference the day before. Thankfully, I wrote down some notes that night, so I can reference that to describe our conversation.
For starters, he explained how his presentation involved a 33-slide PowerPoint presentation. Some of it was extensive data, but one slide displayed my advanced college degrees, the fact that I’m married, and I work as a proofreader. (The slide didn’t have Teresa’s picture on it, so Dr. White apologized for it being an incomplete presentation.)
Everyone involved in the conference agreed that the RNS device was the best surgical option. However, there was an extensive discussion about where to place the electrode(s) to best prevent seizures in the future. (The wording of this sentence is intentional, which I’ll explain a little later.)
The final decision was to place a narrow strip on the surface of the brain with a single electrode going further inside. Dr. White explained that once you get below the surface, a lot of the brain is “white matter,” which he said was similar to a network of wires that send signals in all different directions throughout the brain. In my case, a scan showed some gray spots in that white matter (going all the way back to my time in the womb, my brain didn’t develop properly and those gray spots are the lesions that formed in the process). The single electrode will end up right next to that batch of gray spots.
Thus, I’ll end up with two holes in my skull: one for the electrode and one for the strip (it can be folded over and slid inside, so it won’t require cutting a chunk out to put it in place). The RNS device itself will be located on the outside of the skull. The neurosurgeon will make sort of a groove for the device that curves to match the curve of the skull; it’s the size of a large postage stamp and maybe a quarter inch thick. Not very large, so it won’t require a gaping hole in my head.
The fact that it’s on the outside will also make it easier to replace the battery from time to time. Depending on how active the device is, the battery can last for 5-10 years, then they’ll just need to make an incision in the scalp to replace the battery. (I asked about buying a hat with solar panels to keep it continuously charged, but it sounds like that technology hasn’t been developed yet.)
As I said earlier, “in the future” was intentional because for the first month or so, the computer will basically be in “read-only” mode. It’ll detect seizure activity, gathering information about what happens when my seizures start. (I’m also supposed to have something that I can swipe over my head when I’m having a seizure so it knows that it should be gathering information at that moment in particular. Exactly what that thing will look like or how I’m supposed to keep it handy for swiping at any given time is up in the air—someone will be able to give me that information shortly before the surgery actually happens.)
After that initial stretch of time, they’ll make the computer active, at which point it’ll act like a defibrillator: detect brainwaves misfiring in a way that it was detecting previously, then send a little shock to the electrodes that should jolt that activity back into a more normal pattern. Mind you, the computer can detect that activity immediately, whereas it takes a few seconds for things to flare up to the point where I realize anything is happening, so if everything is working properly, the only indication I’ll have that the device is doing anything will be a reduction or possibly a lack of seizures.
After about a year of the device being active, we can talk about a reduction of seizure medication (I’m currently taking three different kinds at different times of the day, so the less I have to take, the happier I’ll be). Also, as it limits seizure flareups, those flareups will probably get smaller and smaller over time. My brain activity may never stabilize entirely, but the abnormal activity should decrease in intensity.
Post-surgery, I’ll likely be in the hospital for just a day or two. When I get home, I’ll have a lifting restriction of 10 pounds (I had the same restriction after SEEG testing and I broke it after just a few days for the sake of carrying dogs up and down stairs, but I definitely don’t want to strain and cause something to pop, so I’ll probably be more diligent about following weight restrictions this time around). I’m also not supposed to drive until I get a doctor’s permission—I have no idea how long that restriction might last, so it’s probably for the best that I currently work from home.
That appointment was scheduled for an hour; it lasted for an hour and twenty minutes. (That’s what happens when your doctor is both extremely thorough and extremely excited when talking about seizures, brain surgery, etc.) The time between the appointment and writing this? Much, much longer than an hour. Other things have happened between then and now, but I think this was the most significant event that I wanted to write about. Whether I have enough time to catch up on anything else before surgery tomorrow… you’ll find out when you start reading the next blog post.