Another detour in my quest to go more than five days without my neurons misfiring.
I haven’t written an update since my appointment with the neurosurgeon on Friday, in part because I’m still a little stunned and upset and in part because my husband and I were out of town for the weekend, leaving me with little time to fully process my thoughts, let alone blog about them.
In short, it wasn’t exactly the news I was hoping for, but I’m trying, with varying levels of success, to remain positive about the path forward. There is, after all, a path forward, and for that I am—as I keep repeating to myself, in hopes that I’ll begin to 100% believe it—grateful. Fake it ’til you make it, etc. etc.
So, here goes: it turns out that I need intracranial EEG monitoring to pinpoint the probable focus of my seizures and rule out another possibility before I can proceed with the final surgery. The neurosurgeon explained that I have an area of abnormality that aligns with deficits that appeared on the neuropsychology tests that I completed while in the hospital in November but that the neurospychology testing also showed issues that point to another area. The good news is that all of the seizures that I’ve had while hooked up to an EEG have come from the right half of my brain, which is where this abnormality is and where the neuropsych tests indicated that the problem may lie. He also said a whole bunch of other stuff that I should have written down but didn’t.
The neurosurgeon was very clear with me that because of the amount of my brain that they want to cover with electrodes, the surgery involved in this procedure will be relatively major, requiring a craniotomy and the implantation of two grids of electrodes. The risk of complications (mostly infection, but also stroke) are actually higher than they are for corrective surgery itself, which makes sense, if I stop to think about it instead of wallowing in self-pity (jk, jk), since the electrodes remain in place for a significant period of time while adequate information is gathered.
I signed all of the paperwork, and it looks like the surgery and hospitalization—for approx. three weeks, according to the neurosurgeon—will likely take place in October, possibly November. On the one hand, it’ll be nice to have the summer to practically and emotionally prepare myself. It’ll also be nice to not be lying in a neurology ward while it’s warm and sunny out in the real world, and I’m determined to enjoy the next few months as best I can. (Toronto friends, let me know if you want to distract me. My swirling thoughts and I thank you.) On the other hand, it’s hard to have this looming in the distance and to house the continuing sense of doubt as to whether the final corrective surgery will be possible for me or not (we asked about the likelihood and were told that it’s normally 65% but that since I have an identified abnormality, it’s higher).
I’m also worried about changing my mind. I am, in fact, already doubting whether or not I should go through with it. Perhaps it’d be smarter to learn how to better coexist with my seizure disorder, to accept that how I am now might be forever? Is the danger of something going wrong worth the possible payoff?
But then there are reminders of what I’m fighting to change: last week’s (mild) concussion; the many-times-a-week-seizures; the side effects of medications; everyday epilepsy-related fears; feelings of inadequacy and of uncertainty.
Of course, chances are that I’ll proceed. There are, after all, some upsides, in addition to the obvious maybe-getting-rid-of-epilepsy one. For example, my husband, naively thinking that I would practice self-control, promised me all the Lego and frozen yogurt I want if I do so, and I respond exceptionally well to bribes. Luckily, though, I’m meeting with my epileptologist in a few weeks and can ask all of the questions that I was too shell-shocked to throw at the neurosurgeon, who was really nice but was confident enough in this being the logical next step that he didn’t really present it as a choice.
I’ll admit that I’m having a hard time coming to terms with this new development. I was really, really heartened by the idea that I could go directly to the “final” procedure, so the reality of having to undergo another surgery and lengthy hospitalization without the guarantee of eventual seizure freedom, even if the chances that I’ll get there in the end are relatively high, is devastating. All I can do, however, are make informed decisions with my doctors and loved ones, build some Lego, eat some fro yo, start wig/hat shopping—I’ll miss you, hair—and enjoy the summer as best I can.