For most of Mary "Kinny" Chaconas' young life, her parents were plagued by uncertainty: They didn't know when her epilepsy would strike or whether the drugs they tried in vain to control her seizures were doing more harm than good.
Diagnosed as an infant with complex partial seizures - which caused trance-like staring spells - Kinny had up to four seizures a week that medication didn't control. "We were prescribed every epilepsy drug available to children," recalls her mother, Marybeth Chaconas. "Nothing worked."
To make matters worse, serious memory and learning problems surfaced after Kinny started school - cognitive side effects associated with both anti-seizure drugs and uncontrolled epilepsy. Her learning disabilities were so severe that she had to repeat the first grade and enter a special education program.
While Marybeth, a veterinarian, and husband George, a family practice physician, wanted off the medication roller coaster, they remained committed to getting Kinny's seizures under control. "Experts suggest that every seizure does damage to the brain, no matter how miniscule," says Marybeth. "And she was never going to be able to drive a car, and that was going to be life-altering."
After exhausting medical options, her Roanoke neurologist recommended a surgical evaluation at the University of Virginia Health System, a pioneer in epilepsy research and treatment. At UVa, Kinny had life-changing surgery to remove the abnormal brain lesion causing her seizures; the lesion was previously considered inoperable because it rested within the speech and language areas of her brain.
More than a year after the procedure - and a decade after taking her first antiepileptic drug - the 12-year-old is now seizure-free. "I don't have to worry about having a seizure while swimming," Kinny says. "My dad, who coaches my team, won't ever have to call a timeout because I'm having a seizure during a basketball game."
While surgery offers an excellent chance of cure with minimal risk, it is an underutilized treatment, particularly for children. Many doctors don't even consider surgery in the hope that a child will outgrow the seizures. However, children often have the most to gain from surgery because both chronic epilepsy and anti-seizure drugs can have harmful effects on the developing brain, including memory loss, learning disabilities and behavioral disorders.
Kinny is now back in a regular classroom, following intensive remedial instruction. She recently placed third in a spelling bee despite her earlier memory problems. "It's miraculous the progress she has made," her mother reveals. "She is more confident about her future."
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