I’m very much a suffer in silence sort of person, choosing to redirect my focus on anything but my struggles. Occasionally my body demands to be heard.
It’s a Friday evening, the time when a lot of people are considering what to do for the night. Go out? Rent a film? Go to bed?
I’m just waking up from a nap that was essentially forced on me after I had a seizure a few hours ago. When I woke to take my evening dose of medication, I had another one on the way to my bottle of pills. I forced myself to not go back to sleep after that.
For as long as I recall, I’ve had what is now known as complex-partial seizures, a form of epilepsy that is very hard to treat with medications.
I don’t fall on the ground or shake. I don’t stare into space and “daydream” like so many people have done in portrayals of epilepsy over the years. Most people don’t have a clue when I’m seizing, aside from my loved ones. They know what to look for, because my seizures start with a warning sign—an aura—where I experience intense fear. My husband says I get a funny look, so he holds me close, embraces me tight until my seizure passes after a minute or so. I need that physical closeness because of the terror I experience.
One thing I’ve been very lucky to experience when it comes to my seizures—I’ve never lost consciousness. As terrified as I am during the entire experience, I know what’s happening. As a young child, I didn’t know why I kept having “the icky feeling,” but I was well aware of it.
I missed my first day of elementary school because of a seizure. I had to be put on extremely high doses of birth control for my anti-seizure meds to be effective, because being pregnant while on it could cause birth defects. When I was pregnant, I went off the meds cold turkey and was seizure-free for years, until they came back with a vengeance.
I endure awful side effects from the medication, but I still have seizures. The meds mess up my liver and kidneys, and worse than that, they cause a mental fog that strips me of my creativity and my enjoy of life. When I’m on them, it feels an awful lot like the time I suffered clinical depression—numb, uninterested, and zombie-like. I’ve gone med-free for stretches, but now my seizures are becoming more and more frequent. I take my meds, but they’re less reliable.
Earlier this month, I made the decision to have surgery to implant a vagal nerve stimulator (VNS) to help me combat my epilepsy. VNS is a pacemaker-like device that is implanted in the chest. A wire is then run up the inside of the neck and wrapped around the vagus nerve, which control autonomic body functions. This device sends out a pulse ever 5-7 minutes and has the potential to prevent and stop seizures. If a person experiences an aura, like I do, they also have an external wand they can wave over the device, essentially forcing it to send out a pulse before a seizure has a chance to start. That last part sounds wonderful: to be in control!
But there is only about a 40% chance of this working and I’ll need to continue taking my despised medications the rest of my life. Oh, and every ten years, the device needs to be replaced.
I was referred to a neurosurgeon to talk about the VNS, and while chatting, he wondered why I wasn’t considering the other option. Yes, feel free to cue “Dun, dun, dun!”
The other option, which was discussed and rejected in 1999, is a surgical procedure to remove the portion of my brain where the seizures originate. While this operation has been performed for over a century, it wasn’t until the 90s that it was done with great success, and the research shows it is most helpful for patients with complex-partial seizures. It has a much higher success rate than the VNS, leaving 70-94% of patients seizure free on no medications. Those that do have seizures, often only experience auras but not the full-fledged seizures.
So I’m going in on Tuesday to have a new MRI scan taken to see if I’m a candidate, now that MRI technology has improved. My last one was in 2004, and because I now get claustrophobic and panicky in the machine, I’m having this performed under general anesthesia.
If there is a well-defined and obvious area of damage, the success rate of the temporal lobe resection goes up even higher. Then I’ll have to have a functional MRI (read: awake and talking. Eek!) to see if my language would be impaired by the operation. If the spot is not well-defined or my scans come back “normal,” the VNS might be the best option. Either way, I will be having some sort of surgery, I just don’t know which.
That’s a lot or worry happening, and all at the same time I’d hoped to be flying high from my release of Silver Scars. I hope to not fall off the face of the earth during this time. If we go ahead with the VNS, I’ll go under the knife on June 30th. If we do the resection, I have no idea on timing. Sometime this summer, I hope.
Any good thoughts sent my way would be appreciated, and thanks in advance.