The neuropsychologist and his assistant had finished their part of the testing, now it was just the person watching the screen that monitored my brain waves and Dr. White, the man with the button. Thankfully, I’ve been working with Dr. White for many years and we’re on very good terms, so there were no concerns about him randomly deciding, “Hey, let’s crank it up to 20 and see how he reacts…”
No, the rules were still the same: there were maybe seven places per electrode where they could apply a small charge that ranged from 2-8 microvolts and each charge would be applied for five seconds. (For the sake of simplicity, I’m going to refer to each location on an electrode as “the next place.” Because I’m a fan of simplicity when I write. Or I’m lazy, take your pick.) But while the neuropsychologist was doing tests similar to Friday, telling me to identify images and what not, this was more of a “Tell us if something feels unusual.”
I know, that’s extremely open-ended and there were a number of places where the charge didn’t cause any reaction at all. Moreover, there were no sham trials. Regardless of whether I felt anything or not, we went through all four stages—2, 4, 6, and 8—and then moved to the next place on that electrode or on to the next electrode.
Actually, there was one exception to that process. We did the test at 2 and I wasn’t sure if I felt anything (that happened a lot), but when we did the test at 4, the feeling in my head was really similar to when I start having one of those seizures where I can’t process language for about 30 seconds. It wasn’t actually one of those seizures, given that I was able to say, “The feeling in my head is like when I’m starting to have a seizure.” Given that the purpose of this testing wasn’t to induce seizures, we just stopped at 4 and moved to the next place.
Actually, it’s been a week, so I don’t remember if Dr. White actually said “feels unusual,” but he said that I might noticed tingling sensations, things like that. In some places, that was most definitely the case. I might not notice anything at 2, but at 4, I could feel a tingling sensation on the outside of my left cheek and the back of my left shoulder blade. At 6 and 8, the tingling felt stronger, but still in the same places on my body. We moved to the next place on the electrode and the charges caused tingling sensations on the outside of my left cheek and the outside of my left shoulder down to the elbow. Sometimes I wondered if maybe Dr. White said he was applying the charge and I was unconsciously making myself feel a reaction that wasn’t really happening. (He limited that possibility as much as possible by not pressing the button immediately after saying he was applying the charge.) In cases like feeling tingling in my cheek and shoulder, that was most definitely not me unconscious causing a sensation of my own—those tingles could start to sting when the charge got stronger.
But they weren’t all physical reactions. In a few places, he’d say he was applying the charge and then it was like I was having a “Eureka!” moment. Like my brain was putting two ideas together in a way that I’d never understood before, I couldn’t quite say what it was, and then it was gone at the end of the five second charge. No idea what the idea was. At each level, the same idea came into my head and I could never explain it before the five seconds ended and it was gone again. In one instance, I really wanted to be able to say what the idea was and had him apply the level 8 charge three more times, but I was never able to say anything and the idea was always gone when the five seconds was up. I eventually gave up and we moved on, but I still sometimes wonder if it was a brilliant idea that I might have been able to explain if I’d had more than five seconds to process it.
During this part of the testing, the person monitoring my brain waves asked the nurse if she’d like to come over and look at the computer screen. When Dr. White pushed the button, he pointed out how it was affecting the brain waves shown there. I looked at where the nurse had been sitting and a nursing student was still sitting there. I thought it was kind of impolite to not invite her over as well, so I asked her if she wanted to take a look as well. Of course she did! She quickly walked over and started observing the monitor as well for a while.
“For science!” That phrase came out of my mouth a few times toward the end of stimulation testing. Dr. White said that we could stop and finish on Tuesday, but why? Let’s keep going! For science! But it was the second-to-last place on the second-to-last electrode that I regretted my decision to some degree. Probably multiple degrees. And I wish that I’d had some kind of experience or sensation in the past that I could use as a source of comparison: “It felt like…” But I didn’t have that. I just knew it felt awful.
Dr. White hit the button at level 4 and there was no mistake about when the charge actually started. I may have let an “Uuugh” escape my lips when it started. I just felt physically uncomfortable and unpleasant for the full five seconds. Unfortunately, that sensation became less powerful, but didn’t go away at the end. I think Dr. White would have understood if I’d asked him to stop at that point, but I held up my finger and said, “Let’s do it! For science!” And he pushed the button and I felt worse for another five seconds. “For science!” Man, I must love science more than I realized to go all the way up to 8 in that particular instance because it just felt wretched. Thankfully, the last place on that electrode wasn’t nearly as unpleasant when Dr. White pushed the button, but I absolutely needed to take a break when that electrode was finished, try to regain my composure a little bit.
And since there was just one electrode left, we went through it. I don’t think I felt much of anything for most (or all) of all of those places on the electrode because I think he jumped from 2 to 5 to 8 a few times. If I’m not feeling any reaction and the person monitoring my brain waves isn’t seeing any reaction, there’s not much point in checking all four levels like usual. If the lowest and the highest don’t cause a reaction, odds are pretty good that any middle level won’t cause something different. So I was extremely grateful that it was the last electrode and the final experience from the testing wasn’t just an awful physical reaction like the previous electrode. I was also grateful that we finished all of the stimulation testing that evening (I think all of the testing lasted somewhere in the 4-5 hour range) because it meant that I was essentially done. They were able to remove all of the electrodes from my head on Tuesday and I was able to leave the hospital on Wednesday.
But when the testing was over, Dr. White seemed almost giddy because of all of the data we gathered over the course of testing, which makes sense. Aside from the fact that he really loves his work and he’s fascinated by how the brain functions in general, he probably doesn’t have many patients who can explain in pretty descriptive terms what the heck he/she is feeling after that button gets pushed. Moreover, no two patients are going to have exactly the same brain functions with seizures that start in the same location of the brain, etc. Which means that odds are good that any data he gets from these tests is fresh data that he wouldn’t be able to gather from anyone else. He was describing some of the results to Teresa and me, but it was starting to get late, so he just ended the evening by saying that he’d present a lot of that data to the surgical conference at Minnesota Epilepsy Group, they’d discuss the results, and I’ll eventually hear from him and the neurosurgeon what kind of surgery they’ll recommend a few months from now. While I may not have felt the same level of giddiness as Dr. White, I was glad that I made it through all of the testing and provided him with as much good data as possible. For science!