I take Willy back to the neurologist today. We should get the results of the video EEG, the MRI, the blood tests, and whatever other observations were made. We already know the diagnosis is epilepsy, but I’ve learned over the last few weeks that this is kind of like an umbrella diagnosis, so it isn’t very informative. There’s a lot more we need to know about what’s going on.
I’ve been doing a little bit of foreshadowing with Willy about the upcoming visit, but I learned from the previous visits there’s such a thing as too much foreshadowing with such things. It’s not that I tried to make too big of a deal about it. I just wanted him to know what to expect.
Unfortunately, knowing what to expect gave him too much fodder to worry over. I’ve done better this time—and the relative successes of the recent visits and the relative ease of the upcoming visit help. He’s not very anxious about the upcoming visit, but he does know it’s going to happen. He’s just not dwelling on it.
Unfortunately, I am dwelling on it. Mark took a call from the clinic, in which they informed him in a vague sort of way (at least, the information that was relayed to me was vague) that they found something on the MRI. Mark compared it to what was found on Alex’s MRI.
The material regarding epilepsy that was provided to me by the Epilepsy Foundation contains a lot of general information about surgical treatment options. And the combination of something on the MRI, the EEG showing seizures starting in one area of the brain and then spreading, and the material I’ve been reading has me worried. Apparently, there’s a stronger push for pursuing surgery early as a treatment for epilepsy.
We’re talking brain surgery here. And my gut reaction is NO! My more thoughtful reaction contains an expletive. In short, I’m not at all comfortable with the thought of anyone mucking about with my son’s brain.
If a medication doesn’t work or if it has too many side effects, you can always stop taking it. There’s going to be a chance that the damage isn’t permanent (though it can be). If you remove part of someone’s brain that’s it. It’s done. If it goes wrong or doesn’t have the anticipated effects, you’re stuck with the results. After all, it’s not like you can put it back!!!
And so I’m worried. And it’s premature. I know it’s premature, but that doesn’t really change anything. Nobody—outside of the literature—has really seriously discussed brain surgery. But still I worry, because, well, it’s his brain!!!
You knew Willy had to get his overdeveloped sense of worry from somewhere, right?