Breaking Up with My Heterotopias: Part One

Over the past thirty-five years I’ve swallowed a lot of pills in hopes of shutting up my heterotopias, the blobs of neurons in my brain that stomp and scream until I have a seizure. I can name at least ten different prescriptions I’ve tried, and my partner remembers more. My epileptologist and I have settled on four that quiet my heterotopias the most, but those nasty blobs still break through.

Now I’m trying brain surgery to break up with my heterotopias. This was not an easy decision to make, by which I mean it took a shitload of work before my neurosurgeon would agree to sharpen his knives. I don’t remember how many times I’ve let EEG technicians strap electrodes to my head so that my epileptologist could watch those brats’ temper tantrums. Three times I’ve stuck my head into an MRI tube to help her find where those bad boys hide, and twice a neuropsychologist played children’s games with me to see what I could lose if those beasts won’t let go when my neurosurgeon tries to rip them out. Now I’m ready for brain surgery.

Well, sort of.

So far my doctors have only found one heterotopia. They’ve seen only one brat’s temper tantrum on an EEG and found only one of their hideouts on an MRI. However, I’m told that it’s highly unlikely, impossible even, that I have only one heterotopia. More testing needs to be done to find the other brats.

My epileptologist and neurosurgeon have recommended responsive neurostimulation to find the other heterotopias. To do this, my neurosurgeon would peel open my scalp and attach to my skull a responsive neurostimulator, a metallic, rectangular device a little over two inches long. Then he’d string wires from the neuostimulator to multiple points in my brain. Everytime a heterotopia screams and stomps, the wires would signal where the brat is, and, gotcha, it’s fucked.

Given that the neurosurgeon would have to split open my scalp, inserting a neurostimulator still constitutes brain surgery even if my brain remains whole. And because it’s brain surgery I want a second opinion. But I haven’t pursued one since before the pandemic began because my insurance wouldn’t cover it.

I’ve recently changed insurance, and my new one promises to cover second opinions. Even better, my epileptologist has referred me to a doctor for my second opinion who is covered by my new insurance. A second opinion moves me closer to responsive neurostimulation which moves me closer to, fingers crossed, finishing off my epilepsy. Jackpot.

But it’s been two weeks since my epileptologist made the referral, and I still haven’t called to schedule an appointment for the second opinion. I’ve been waiting for this opportunity for almost two years, but I keep postponing punching in the ten numbers on my phone that will bring it to me. Why? Why don’t I want to break up with my heterotopias?

I don’t have an answer. If I did, I probably would already have made the call. Over the next week, I’ll consider why and share my thoughts in my next post. Perhaps this process will lead to a phone call. Fingers crossed although, honestly, I’m not sure what for.

2 thoughts on “Breaking Up with My Heterotopias: Part One

  1. It is scary to change things. What if the intervention made things worse? I empathize with your dilemma… but I encourage you to get the “second opinion”.


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