My husband has epilepsy which has unfortunately proven difficult to treat with anti-epileptic medications. We met with his neurologist yesterday, who suggested that the accepted protocol nowadays is to start pursuing the option of brain surgery early rather than as a much later, last resort. This is scary stuff, complicated by the fact that we have a baby on the way and that the epilepsy is not so serious that it's a rush/emergency situation. What should we be thinking about as we proceed? (Apologies in advance for this getting long.)
posted by catch as catch can to Health & Fitness (14 answers total) 4 users marked this as a favorite
As a quick background: he has been experiencing seizures for at least 4 years (best guess -- that's my first record of him complaining about it), but was only diagnosed last year after an unobserved loss of consciousness where he fell and hit his head at work (which we later determined was probably a tonic clonic seizure) and then an observed tonic clonic which confirmed the suspicion. He typically has partial seizures, both simple and complex; once he was put onto AEDs, the tonic clonics were completely controlled. Unfortunately, we have been through 3 different drugs (lamotrigine, levetiracetam, and zonisamide) without any real reduction in the frequency of his other seizures. The lamotrigine produced no change (he started out having maybe 2-4 a day for 2-3 days with 2 week gaps in between); the levetiracetam unfortunately increased the frequency drastically (up to 7-10 seizures a day); and the zonisamide has had a small effect in reducing the frequency (he's now having about 3-5 every day).
The process leading up to epilepsy surgery is a fairly long one, we know, involving lots of tests. At the moment, based on the tests/scans he's already had, they suspect that the seizure activity is originating in the hippocampus, based on a scar or lesion that's present in that area, but they're not 100% sure that the activity is completely localised to that area. His neuro isn't being pushy about what we should do; the effect of the latest drug is a positive change for us, and while he thinks having the pre-surgery test assessment is a good idea, I think he's also very open to tinkering with the drugs a bit more to see if we can solve things with that tool.
I'm feeling really torn. On the one hand, the last couple of years has been absolutely hellish for both of us, but especially my husband. Both the seizures and the drugs have affected his abilities at work, his memory, energy, confidence and mood, and produced a real shift in our relationship. I saw a therapist earlier this year for about 3 months to try and help me cope with what felt like a permanent, depressing change in him and in our interactions together. I suspect that he was experiencing depression himself, although he didn't feel comfortable speaking to anyone else about his mood. And while we're both incredibly excited about a baby coming along soon, I have plenty of worries about what even a basic thing like lack of sleep is going to do to his seizure frequency.
On the other hand, as I said, we have recently seen a positive reduction in seizure frequency, and he's told me that he's felt much better emotionally the last couple of months. Whereas there were moments of real darkness before, we've not had those "god this feels neverending and hopeless" heartbreaking discussions about his disorder for a good while. But he's not fixed, and from our conversations with the neurologist, there's very little chance that he could become 100% seizure free with the medications in a quick period of time (ie. he sketched out a possibly decades-long future filled with drug experimentation and tinkering, more of what we've already been doing for the past year and a half, possibly without end).
My husband doesn't like the idea of brain surgery at all, although he has said he's open to having whatever tests done that the doctor thinks necessary. We've talked about what he could be happy living with as far as seizure frequency, and he seems to think he'd be ok not being seizure free, but wants it to be much lower than it is now. While the small amount of research into epilepsy surgery that I've already done is not overly frightening (and is actually quite heartening), the fact that they'll be futzing around with the temporal lobe, specifically the hippocampus, with their attendant language and memory functions... I dunno, it's difficult not to let my fears carry me away. Logically, I understand that brain surgeons are not weekend diy car mechanics, and that the purpose of all the tests is not only to establish exactly where they need to be cutting, but also just to establish if it's a simple enough job to undertake at all. But I think he and I both have a visceral aversion to the idea of elective brain surgery right now. I also have reservations about what recuperating from brain surgery + a young child will be like. We're in wait-and-see mode at the moment, but there is a real chance that the drugs will not get him to the place he wants to be WRT seizure frequency, so at some point, we're going to have to really sit down and figure out if the surgery is something we're comfortable with.
I can't imagine there's many (any?) mefites who have experience with surgery to treat epilepsy, but perhaps some of you have insight into brain surgery in a general sense, or experience with a problem that could have been solved relatively quickly with an elective surgical procedure with high stakes but also might've been solved with a long slog through drug options. It's not an overly urgent problem, as noted, but I'm struggling to think about it without getting teary, so I know that I'm probably missing logical things and/or not framing it dispassionately enough. Any literature or resources that you might have found particular helpful, whether about brain surgery, or about choosing to have brain surgery, or general insight? What might make or break this decision for you? Sorry to be vague, but you know, it's scary and I need a little bit of hand holding, maybe? TIA, y'all.