November is Epilepsy Awareness Month, and the last few years have seen some groundbreaking advancements in the search for a cure. This comes as welcome news for the more than three million Americans with epilepsy – about 224,000 of whom live right here in Florida.
While epilepsy can develop at any time from a wide variety of causes, many patients are diagnosed as young children. The Comprehensive Epilepsy Program at Florida Hospital for Children is one of the country’s leading centers for research and treatment of pediatric epilepsy, embracing cutting-edge technologies and medications to give childhood epilepsy patients the hope to live normal, seizure-free lives.
We spoke with the program’s director, Dr. Ki Hyeong Lee, about what sets the center apart, what parents should look for, and one amazing surgery making seizures a thing of the past.
Q: First of all, could you define epilepsy?
A: Epilepsy is a brain disease that causes recurrent seizures. It can be caused by many different things, for example, stroke, brain injury, head trauma or infection. Whatever the cause, the brain function is permanently altered, firing excess electrical activity that causes seizures.
Q: You work with pediatric and adult epilepsy. Do most people who are epileptic get diagnosed as children?
A: There are two clear groups: one is early childhood epilepsy (before age 6), and the other is after 15 or 16 years of age. Typically, childhood epilepsy is something people are born with. Maybe they had a prenatal stroke, or they were born with a brain malformation or suffered an injury during a difficult delivery.
Over age 50 you see another surge when people start suffering from various form of brain injuries and – such as from car accidents, military combat or stroke, which is a big cause. Once the brain is damaged, you may develop epileptic seizures afterwards.
Someone who has a seizure for the first time ever at age 50 should be careful because it could be a sign of brain tumor or a silent stroke.
Q: Minimally invasive surgery has been in the news lately as an effective cure for epilepsy. Can you describe what it is and who can benefit from it?
A: First of all, there are about 3.4 million epilepsy patients in the U.S.; not all of them need brain surgery. Any given year, we believe there are about 310,000 drug-resistant epilepsy patients who really need an evaluation to determine if they are a candidate for surgery.
Published data indicates that out of 310,000, only 3,000 patients are getting brain surgery. That’s only one in 100 patients, a huge underutilization. Obviously, people have fear and anxiety about complications, pain, long recovery time. But recent development of the minimally invasive surgery is changing the landscape greatly. It’s quite exciting.
Q: What’s the difference between the minimally invasive surgery and conventional surgery?
A: To really cure epilepsy, number one, you have to find the spot [causing the seizures]. Number two, you need to get to that spot and remove it safely. Basically, take out bad brain without hurting good brain.
In the past, we would have to do open-skull surgery to place electrodes in the brain. Now, instead of doing open surgery, we have a system called ROSA, which is a robotic arm. The robotic arm with navigation system allows a neurosurgeon to place multiple electrodes through very small (about one cm) holes without opening the skull.
With the electrodes inside the brain, we keep the patient in the ICU, stop medication and let them have seizures so we can map out exactly where the seizures are coming from. Then, let’s say we find a spot in the brain. In some cases, we can offer laser ablation surgery using those same small holes, so we can spare open-skull surgery altogether.
The side effects and complication rate is one-fifth of typical surgery, and the recovery time is almost absent. The patient wakes up feeling the same.
Q: What is the success rate of this surgery?
A: Across the board, either laser or conventional surgery, we’re looking at a 60 to 70 percent success rate – meaning a total elimination of seizures.
Q: How frequently are you performing this surgery at Florida Hospital?
A: Quite often. We have one or two cases every week.
Q: What sets the Florida Hospital epilepsy program apart?
A: First of all, we have a truly multidisciplinary program that treats children and adults with epilepsy. Specific to children, we have three pediatric epileptologists, two pediatric neurologists, pediatric geneticists, three pediatric neurosurgeons and two pediatric neuropsychologists – truly every component you need to be a very successful team.
The whole program is supported by good infrastructure. For example, we have intraoperative MRI, which allows us to complete the surgery with no guesswork. We are one of the only hospitals in the Southeast with an MEG (Magnetoencephalography) imaging system, which is one of the most accurate diagnostic systems. We have PET scans, SPECT scans, 3Tesla MRI scanners. The infrastructure is just as important as the multidisciplinary team.
We were also an early adopter of this minimally invasive surgery, and the only program in the state of Florida offering all of this technology, including laser- and robotic surgery, to the epilepsy population.
Q: What do parents need to know about pediatric epilepsy? What should they look for?
A: About 70 percent of children with epilepsy do well. In other words, they get diagnosed, they take medications, they are developing well and the seizures stop.
However, if your child is on the right medication with the right dose and still having seizures, parents should come forward to specialists like our epilepsy center. We usually tell parents to try at least two different seizure medications, and it usually takes about six months to a year [from diagnosis] to find out if your child is one of the 70 percent or part of the other 30 percent (drug-resistant epilepsy).
Also, sometimes with pediatric epilepsy, kids may not have overt seizures. They could be having silent seizures at night, but then the child starts regressing, losing skills or becomes unable to learn new information at school. These developmental delays can be another sign of bad epilepsy.
Q: How much progress has been made in treating and curing epilepsy over the years?
A: We are still learning, but we have really come a long way. We started this epilepsy program in 2011, but I’ve been involved in epilepsy surgery since 1997. What’s new is that we’re developing better technology, better imaging and better testing to find the right candidates.
We’ve recently started looking at autoimmune and inflammatory diseases, and we’ve actually cured dozens of people through medicine. These are the areas where we are making progress, and with that progress, we are making epilepsy much more controllable, if not curable.
If your child has epilepsy and you are interested in learning more about treatment options, or if you would like to have your child evaluated for seizures, click here to contact Dr. Ki Hyeong Lee’s Comprehensive Epilepsy Program at Florida Hospital for Children at (407) 303-KIDS (5437).