14 –year-old Jenna Carmen was diagnosed with epilepsy at age four. For nearly a decade her seizures were controlled with medication, but a little over a year ago her they suddenly became much worse explains Denise Carmen, Jenna's mom. Jenna was having both clinical seizures – ones with visible tremors - and non-clinical ones.
Denise Carmen: so the brain was firing even though we weren't seeing tremors – she was on three different medications at once and having five non-clinical seizures an hour.
Jenna's doctor in Columbus immediately sent her to the Cleveland Clinic. The nurses station in the pediatric epilepsy wing contains a wall of computer screens that allow nurses to monitor each patient – both by video surveillance and by their brain waves transmitted from a grid of electrodes placed either on the suface of the skull or inside the brain itself . It was here that a team of doctors monitored Jenna's seizures for nine days. Dr. Lachhwani, one of the Clinic's epileptologists gives me a tour.
Lachhwani: What happens is kids would come here to this unit, we would slowly take their medicines away, and then allow them to have seizures. And when they are having seizures we are able to record everything, from a video– so how do the seizures look on the video, and what happens with the electrical activity of the brain. And then there is a whole team that is analyzing this data 24 hours a day, seven days a week, 52 weeks a year.
Epilepsy, explains Lachswani, is often caused by a cluster of damaged cells that set off a chain reaction he likens to an electrical storm that spreads throughout the brain. Through careful monitoring, he says they can determine the location of the rogue brain cells, and then figure out if the part that's causing the trouble can be safely removed without damaging other functions, like speech, vision or movement. For patients like Jenna, whose epilepsy was just two centimeters away from her speech and language center, the experience can be transformative.
Jenna Corman: It's been amazing. The surgery has changed everything
Cuda: How has it changed everything?
Jenna: Schoolwork. We used to study four or five hours a night and my mom would have to help me write notes and now I just go back in my room and study for an hour and get A's on the tests. My grades before would be B's and C's and this year it was A's and B's
In the fourteen months since her surgery she hasn't had a single seizure, and she is slowly being weaned off her medications – something Dr. Lachhwani says is not unusual. Her biggest concern these days is getting her learner's permit. Something her mom says was once completely off the table.
Denise Corman: This time last year we were talking about she would never drive a car.
Diving is something 16-year-old Tanner Ray is looking forward to as well. He spoke to me from his hospital bed just two days after his surgery.
Ray: The first night after the surgery I admit I cried, because it hurt like the devil. That's the worst headache I think I've ever had in my life. But once all that's over with and I'm back to living a normal teenage life, I'll just look back at all this and laugh.
The remark elicits laughter from family members by his bedside, and a wry smile from Tanner. Clearly he feels he's in good hands.
Neurosurgeon William Bingaman says not all epilepsy patients are candidates for surgery, but the Cleveland Clinic is well-suited to evaluate which ones are. The Clinic does 300 surgical epilepsy cases a year, 10 times the average of other epilepsy centers.
Bingaman: The average doctor that might take care of them might say, well you know that's the part of your brain where your language is and it moves the right side of your body and it's not really a good place to operate and brain surgery's kinda scary anyway, so here, take this medicine and we'll just see what happens. And just because you have seizures coming from an area that might have function doesn't mean you aren't a candidate.
Whether through medication or surgery, says Bingaman, getting seizures under control is critical for children, because seizures can interfere with normal brain development and may progressively become worse over time. And while brain surgery might seem drastic, for the right patients the prognosis is excellent. Jenna and Tanner and hundreds of patients like them are leading normal, happy, seizure free lives – and they don't appear to regret giving up a small part of their brain for it one bit.
Gretchen Cuda, 90.3