I think those two are my current options for covering up what’ll likely be a bandage on the top of my head sometime in the near future (I’m assuming the hospital won’t use spackle to plug up the holes in my skull, then staple a wig onto my head, but I’ve been wrong before…).
I spoke to Dr. White (my epileptologist) yesterday about the surgical conference and he told me that it went well and there was basically universal agreement that the eventual result of brain surgery will be some sort of device inside my head, most likely an RNS (responsive neurostimulation) device.
But that’s not the next step. Because RNS is supposed to affect a very specific area in the brain—the area where the seizures start—they need to do a different test to find out exactly where that area is.
I’ve had several EEGs (electroencephalograms) done in the past, the most recent during an extended stay in the hospital for seizure monitoring back in September 2023. As soon as I arrived, they glued a whole bunch of electrodes to my scalp and began monitoring my brain wave patterns. They tapered off my medications fairly quickly to try to induce seizures, which effectively induced seizures fairly quickly as well.
For context, the seizures I typically have these days affect my left temporal lobe, the language center of the brain. Thus, when I have a seizure, I might stop speaking mid-sentence because I don’t know what I was about to say—the words are just gone. If I’m trying to listen to something, whatever’s being said doesn’t make sense. If I’m trying to read, same problem. Language is basically out the window. After maybe 30 seconds, I’m okay again. I might need a little help remembering what I was saying, but if there are no words being spoken at that time, you might be standing next to me and never know anything happened.
It was only a few days into my hospital stay when I got a call on the hospital phone. I answered and didn’t recognize the voice. I couldn’t really tell what the voice was saying, but I tried to respond to whatever it was saying (I’m told it was basically gibberish). It wasn’t long before I realized that the person I was speaking to on the phone was my older brother. When the call began with gibberish and ended with “Love you, bud”… you can imagine why my wife was spooked. And what showed up on the EEG?
Nothing.
The area where the seizures start is too far away from the surface of the brain, so the sensors on my scalp couldn’t detect the abnormal brain wave activity. Thus, when I head back to the hospital in a few months (I don’t know exactly when, it hasn’t been scheduled yet), we’ll be doing a slightly different test: an SEEG (stereo EEG or stereoelectroencephalography).
Instead of gluing the electrodes to my scalp, they’ll be inserted deeper inside the skull and thus be able to detect abnormal brain activity a lot more accurately. Not just detecting the activity, but where the activity originates. Since the RNS device sends a little electrical charge to the brain to stop that activity before it becomes significant and turns into a seizure, finding that origin point is kind of important.
And so after my stay in the hospital, I’m going to have at least a partially-shaved head (I think I’d prefer shaving all of it rather than having a weird bald spot right in the middle, but that’s just me) and some small holes where the electrodes were inserted. Call it vanity if you want, but I feel like I’ll want to cover that space up while the spackle dries underneath the bandage, thus begging the question: A ball cap, a fedora, or do I need to go shopping?