Patty McGoldrick NP, MPA: So when do people come to discuss epilepsy surgery? The problem that we've had historically is that people wait a very long time before we consider taking them for epilepsy surgery. These are people with intractable seizures that have gone on for years. The mean time for epilepsy surgery from the diagnosis at this point is almost 20 years. And really people that become intractable are candidates for epilepsy surgery, people whose seizures are poorly controlled, who failed one or two or three meds. They don't have to go through seven or eight different medications before we start thinking about other treatment options, one of which is epilepsy surgery.
Steve Wolf MD: Now "intractable" means uncontrolled seizures. But for me, if I'm having a seizure a month and I can't drive, that's intractable. That means my seizures are not well-controlled on my medication, and I need to get a better medication so I can have a normal life.
Patty: And what happens often is that aren't classified as intractable unless they're having 20 or 30 seizures a day. And yet it's just as much quality of life impinging on the people that have one or two a month.
Steve: But talking about epilepsy surgery, it scares people, you know. And patients need to go in and say to their doctor, "You know, my seizures aren't well-controlled. We've tried a zillion medications. Is there some other option?" The patient has to go in there and ask this, because the doctor sometimes doesn't want to use that word, "intractable," because it's so negative.
Patty: And it seems like they've failed, that the doctor is not doing the right thing with the medications, when in reality there are certain types of seizures and epilepsy that present right away. Temporal lobe epilepsies respond very well to epilepsy surgery. People who have atonic seizures respond very well to certain types of epilepsy surgery. People who have a very focal area of the brain, a very discrete area where the seizures are coming from, depending on where that area is, are very good candidates for epilepsy surgery early on. And that conversation and that discussion should occur early on the process and not wait 'til years and years of uncontrolled seizures.
Steve: I think there's a stigma, a fear that comes with brain surgery that people sort of worry about. Yet surgery has come along so far in safety and preventing seizures, preventing problems. It's not as scary as you think. So I think when your seizure's not controlled, you need to have that conversation with your neurologist about what are my other options.
Patty: And then the people that are candidates for epilepsy surgery should be referred to an epilepsy center where there are comprehensive services including neurosurgery, someone specializing in epilepsy surgery, epileptologists, epilepsy nurses, social workers that work with you, so that you're in an environment so that you can get all that you need when you're first considered for epilepsy surgery.