Mark Lee, MD, PhD, Chief of Pediatric Neurosurgery at Christus Children’s, talks about treating seizures with brain surgery.
Interview conducted by Ivanhoe Broadcast News in 2024
How did you fix Reagan?
Lee: Seeing the parents after she had recovered from surgery, and what they said to me says it, which is, this is our girl. She came out. That’s the G-whiz for me. How we can impact a child’s life and the family’s life in a very, very positive way. When the parents say things like that, and these parents were the same, there are tears in their eyes, and to be able to feel that type of gratitude from another human is so special to me. That’s my G-whiz.
Some parents have sick kids, other people have no idea what that is. Do the parents feel helpless? And in Reagan’s case, describe that to us.
Lee: Reagan for some time, she was very young when we operated. She was probably a little bit over a year old. But for probably six to eight months, she was not a kid. She was having 200 seizures a day. There was just no way that she could have any awareness, the parents knew that. She was not developing at all. She couldn’t even roll over as a 13-month-old. When a lot of 13-month-olds were walking and starting to talk, she was still like an infant. She had not developed at all. During her workup, we discovered that she had a congenital condition called hemispherectomy. That’s where one half of the brain, the hemisphere is very abnormal. It’s a developmental anomaly. When the brain is forming and the nerve cells are trying to migrate to the right place, they get stopped for some reason. They tangle up and they just form this mass of unorganized brain cells that don’t have any normal function, but they can have seizures. For Reagan, this very abnormal hemisphere was doing her no good. With all the seizures, as I said, 200 seizures a day, it was causing the normal side of her brain to not function also and not develop. Over time, that would cause serious damage to the other side. The potential to control the seizures is a very traumatic operation called hemispherectomy. In the old days, we would remove that whole half of the brain. Currently, with newer technologies, we go in through a much smaller opening and disconnect that whole half of the brain. It’s still there that abnormal hemisphere, but it’s not connected to her. It’s not connected to the rest of the brain.
Does that tangle die off after the surgery?
Lee: No, it just sits there, but it has no effect on her anymore. The advantage of doing this operation. Technically, it’s difficult. But the advantage of doing this type of operation is that the recovery is much faster, it’s much less blood loss. We frankly, we go make a smaller opening in the skull.
The tangled part reminds me of Alzheimer’s, where everything gets tangled up in the brain. Are there any similarities there?
Lee: No, with Alzheimer’s, there are tangles, but they’re very discrete and focal. With her, it was the whole hemisphere that was abnormal.
Is that environmental? Is it congenital?
Lee: It’s congenital. It’s called cortical dysplasia. It’s a migration problem when the brain was forming, and it took her whole half. Typically, lots of times in epilepsy, we’ll see what we call focal cortical dysplasia. That’s a small area in the brain that did not form correctly, and that’s causing seizures, we can go in and remove that or ablate that with a minimally invasive procedure called laser ablation to control the seizures. With Reagan, we had to do an operation to affect the whole half of the brain.
Did you open her up as opposed to a keyhole?
Lee: Yes. We did what’s called a craniotomy, which is opening a window in the skull to get access to where we needed to go to disconnect the hemisphere.
When you get into somebody’s brain, particularly a child, it must be this overwhelming feeling of, ‘I’ve got to save this patient,’ and pure focus on your part, right?
Lee: Yeah. I think a lot of people like to think of, doing brain surgery as very technical. There’s huge emotion involved because yes, there is this child. This child could die. You’re thinking about that. You’re not afraid and thinking about it, but there is this huge emotionality during the procedure and like you said, a tremendous amount of focus for hours and hours at a time. When I come out of a surgery like that, I am tired, but I’ll tell you, I fall asleep on the couch because it’s draining, both emotionally and just the mental focus that’s required.
No wonder when you walked out and the parents made that comment, no wonder you felt great, right?
Lee: As I’ve progressed in my career, I’ve learned to accept that gratitude. I realized I was missing that human connection early in my career which was very unusual. Hardly any humans get to feel that. I allowed myself to feel that years ago.
I want to get into that, where Reagan was having these seizures 200 a day, post-surgery, what happened?
Lee: She immediately stopped having seizures. The parents were amazed. They said it’s been since she was an infant that we’ve seen her not have a seizure. That was their initial response. The other thing is that she did have and this is very typical after this operation. She was paralyzed on one side of her body. But we know that after this operation they’ll make an excellent recovery. Over time, the leg comes back first then the arm. As I told the parents, she will be able to walk, she will be able to run, she’ll have a limp, she’ll be able to use her arm. She won’t be able to use her hands. She won’t have fine motor movement, but she’ll be able to do everything that kids supposed to do. The other side of the brain takes over, especially at this age, it takes over all this function.
Do those tangles ever get in the way again? Do they just sit there?
Lee: It’s not like a tumor, they don’t grow or anything like that. They’re doing bad things to her. Now they’re not doing bad things to her.
How do they tell the difference?
Lee: Epilepsy can be caused by a lot of things. You’re right, that it’s not super uncommon and high fever in the very young, but that’s just like a one-time episode. These are repetitive. Reagan is a dramatic example, but these are seizures that happen once a month or once a week. It’s repetitive. It’s not just that one time high fever having a seizure.
How old is she now? And how has this helped in the growth pattern a lot of people that might not consider that? It impeded everything with her?
Lee: I don’t know how old she is right now because they’ve moved back to West Virginia. I would guess she’s probably about three two three and a half. She’s being followed by doctors there, but I understand that she’s not having seizures and she’s developing normally.
What is the operation called?
Lee: The operation I did is called a hemispherectomy. The “otomy” means making a hole, “ectomy” means removing. Essentially what we do is we make an incision on the side of the head like a reverse question mark. We have to cut a window in the bone and remove that and we put that back afterwards and put it in place with little screws. We then open the surface of the brain to get into what’s called the ventricles, which is the fluid filled spaces where cerebral spinal fluid is made. Then within the ventricles, we’re able to do a complete disconnection of the whole hemisphere from not only the other side, which is we remove what’s called the corpus callosum from inside the ventricle that connects two hemispheres, but we also have to disconnect it from the midbrain structures because otherwise it could spread back to the other side.
How new is this? And it replaces something that was far more invasive, correct?
Lee: Yes. The hemispherectomy was really started in the 1950s. This was for people who had a really rare condition called respiratory encephalitis. Basically, it was like it’s probably an inflammatory response, but it would injure that hemisphere. When they would do this operation to remove the whole hemisphere. I don’t know, there may have been 100 done. But then years later, the patients would always have a lot of complications related to all that space in there. Then in the late ’60s, another operation and 70s was devised called a functional hemispherectomy, where you would do that disconnection, but you would leave isolated frontal lobe and occipital lobe to cushion things. That got rid of that complication. The evolution to hemispherectomy happened actually maybe 25 years ago, to basically have a smaller safer operation that you could recover faster.
Does Reagan have to have a shunt to remove the spinal fluid?
Lee: No Reagan did not need a shunt. That’s the other thing when the old hemispherectomy operation, that was occurring before shunts were invented. My guess is that if there was shunting at that time, because these patients all developed hydrocephalus? Yes, right. The other thing about the hemispherectomy is that there’s less risk of developing hydrocephalus and requiring a shunt.
END OF INTERVIEW
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