Muhammad Zafar, MD, Pediatric Neurologist, Associate Professor and Director of Epilepsy Monitoring Unit at Duke Health talks about brain surgery to stop seizures.
Interview conducted by Ivanhoe Broadcast News in 2024.
When did you first meet Ela Allam?
Zafar: So I met Ela three years ago. I clearly remember the first time when I met Ela and her family. The very first thing I remember was how sharp, how bright, how intelligent that girl is. At the same time, the thing that broke my heart was she was limited by the seizures to reach her full potential. That’s the first thing I remember when meeting the very sweet family and the child was very brilliant, but unfortunately, because of the seizure, she was limited by how much she can do.
Her seizures were initially caused by a stroke as an infant, right?
Zafar: That’s correct. Let me repeat this, story. So for her seizure, it happened because of her unfortunate episode incident happened when she was in utero inside her mom’s belly, and then that caused her permanent deficit on one side of the body, as well as causing the seizures.
She had a stroke in utero?
Zafar: That’s correct. She had a stroke in utero.
How did that set off the seizures?
Zafar: So the area that got injured around the birth time that irritate the surrounding brain tissue and cause the seizure. So typically, all the brain areas are connected to each other and they talk in harmony with each other and so you do not have the seizure. What is when one part of the brain get affected or injured, then that connection is lost, and then that part of the brain get active and started seizing.
Were they becoming worse as she was getting older?
Zafar: That’s correct. What happened is as the child grow, her brain grows too, and with that, her epilepsy change. As her brain started to make new connection with the body, the seizure started to get more and more and more frequent. And that’s exactly what happened with Ella. She was having some seizure when she was little, but by the time she get three years, four years, five years, seizure frequency increased, seizure duration increased, and they get more and more violent. And that’s typical of what we see in children as they grow, the seizure started to get more and more aggressive or more stronger.
That just affects every aspect of her life, especially as the brain is a little sponge where they’re that young, and yet when she’s dealing with seizures it’s really making it hard for her to grow and be educated and get to the school and what she needs, right?
Zafar: That’s correct. How I explain is, at that age, when the brain is growing and developing, it is doing a lot of- so as the brain is growing and developing, it is using a lot of energy to learn new skill, to learn new language, to learn new social skills. However, if that process is hindered or affected by any insult on top of that, which in her case is seizures, so that process is not done right, so the children started to get affected in terms of the language, they have poor school performance, their mood started to affect. And I think of this way, all the energy that are supposed to be used for learning these skills are not trying to stop the seizure and or have a seizure. So the children development started to regress and even they started to go back to even the younger development skill because they’re continued to having seizures.
It’s hard to see someone like Ela who’s just so adorable and vibrant and to see that that was for trajectory was going down and medication wasn’t really helping.
Zafar: Exactly. So when I saw her, my daughter is same age too. She reminded me of Amelia, my daughter, and I can see how much I look at my daughter, how much I want her to do in future and how much I want her to progress. I saw the same thing in Ella. And she could- she can do all those things, but because of seizure, it was stopping her from doing all those things. So then we started- when the first time I saw her, I started thinking, how can I help her to get rid of the seizure, to cure her epilepsy, so she can continue to thrive and be amazing part of the society or community. So the medication was not helping, the school performance was going down, she’s getting complaint from the teacher, our mood is she’s falling at home, falling in school, the parents were scared to go to sleep because of the seizure. On top of that, she’s on a bunch of medication that’s prescribed by neurologist and by me, that is causing the side effect. So overall, she was not in a good place when I met her. Although I can clearly see the bright future, that is possible for her.
Can you explain what a hemispherectomy is?
Zafar: So hemispherectomy is one of the more complicated and complex neurosurgical procedure that the surgeon do here. And that sound very scary that we’re removing one part of the brain, but for her, fortunately, that was saved her life. So what happened is hemispherectomy, one part of the brain that is injured early in life because of any injury around the birth time or later in the first two, three years of life. So that part of the brain loses all the function because injury happened very early. But on top of that, that part of the brain started causing seizure. So hemispherectomy essentially mean disconnecting or removing half side of the brain that is causing seizure and not causing any development. So that procedure is very advanced, very sophisticated. Our neurosurgeon do it here, and she went through that procedure and she’s doing amazingly well after the procedure.
Can you tell me a little bit. It was the right side of the brain. So for people who don’t know, sometimes we forget what we learn in school, the right side of the brain controls what? She was losing what type of function? And how were you able to reroute that?
Zafar: So generally, our right side of the brain control left arm and left leg and left face, and the left side of the brain control my right side of the body, face, arm and leg. So what happened in Ella case, so her right side of the brain got affected because of the injury at birth. So the part that should be controlling by the right side of the brain, including her left arm, left leg, left face was weaker than compared to her right side to start with. On top of that, since that part of the brain is injured, so that function was moved to the other side of the brain, the healthy brain on the left side. So her function that was supposed to be carried on by the right hemisphere moved to the left hemisphere because the injury happened very early in life. And that was the thing that made us go for the surgery. Meaning that if we remove her right side of the brain, she will not cause any more weakness because her function is already moved to the left side of the brain. To give you an example, if same surgery is done on me as an adult, and if I have half side of my brain removed, I will not be able to get recover that function on the other side back ever because my brain is now formed, all the function are fixed. Versus for children, the term we use is plasticity, the brain is still growing, the brain is still making connection. So if you have an injury happened while during the process of that development, that function moved to the other healthy side of the brain. So what we did was we use that plasticity in our advantage. So if we do the surgery early, the children usually recover well when the plasticity is still going on. If we wait and wait for 10 years, 15 years when the brain is fixed, then if you do the same surgery, it will have more adverse effect in terms of weakness. So the point or message I wanted to pass or make is early surgery is one, it can help to take the seizure out, also, it can help the children to learn the new skill because the brain is growing. If we wait and do the surgery later, it’s harder to get those functions.
Can you explain what you have to do? Do you have to reconnect nerves? What do you have to reconnect over to the right side?
Zafar: I think that beauty is that we did not connect, we let her brain do that. So since her brain was young, so it was connecting herself, was making a new connection on her own. All we did was we disconnected the abnormal part and let her body re-learn herself to make a new connection. But if we have done, yeah.
Is that a ton of brain surgery?
Zafar: So hemispheric if I can go over a little bit. Yes, it is open brain surgery, the surgeon, they remove the bone- skull bone on that side of the brain, and then there are two hemispheric one is called structural in which we remove all the brain outside. The second is functional which our surgeon did it here. Instead of removing that part of the brain, we disconnected all the different part of the brain. The advantage of that two procedure is- the second procedure is, since you’re not removing any part of the brain, all the brain is still there, you have less chances of future bleeding, future pressure building on the part of the brain- side of the brain that you took the surgery.
Is Ela completely seizure-free?
Zafar: Fortunately, yes. It is so glad and reassuring and so gratifying to see her that she has, yes, she is completely seizure free since the surgery, the day after the right the next hour of the surgery, she had not had any seizure since then. And on top of that, even better, I’m started to take the medication off which she was taking for seizure, and she is now completely off of all the seizure medication. So not just a seizure is stopped, not just function of all the body, she is now off of all the anti-seizure medication.
Why wouldn’t you do this with any child that is still having seizures and taking medication?
Zafar: So I think that’s the message I want to say that every child who has seizure who are not responding to medication- to a more medication should be evaluated for surgery. And there is a big gap in between how many patients are having seizure to how many actually get to the surgery. To just give you perspective in the US, so we have roughly 200,000 patients who have epilepsy, 100-200,000 patients who have seizures. But only 3,000-4,000 will go to surgery. So all the rest is because of our fear, because of the physician fear, parents fear, because of the complexity of the brain surgery, people do not even refer to this or think about the surgery. We are in a situation- we are fortunately in a place where we have expertise. We have all the equipment, we have the training and staff for the most advanced treatment, so we can help those children. Does not mean that the child who is not close to the hospital cannot get this treatment, but what message is, they can at least talk to their physician, they talk to their neurologist, and they can refer them to the nearest tertiary academic center, which are the epilepsy center like the Duke University Hospital. So we can evaluate children thoroughly, and if child needed the surgery, we will provide the cure for the children.
Anything we’re missing?
Zafar: So I think the point that again, two point I want to make is, one, is that early surgery have better outcome. So rather than waiting and then child is now failing many medication and now it’s 15, 16 and now doing the surgery, what message we as a child pediatric knowledge as a center with advanced epilepsy service, our message is, please consider surgery early if you think medication is not working. Please refer to nearest level 4 epilepsy center so we can guide in advance. So that’s the one message and earlier surgery has better outcome, if the same child, if you have done surgery later in life 2030, we may not have the good outcome of strength coming back. So that’s one. The second thing I want to say that as I told you, there are 100-200,000 patients in the US that had epilepsy, but only 3,000-4,000 go to the surgery. So the message I want to give is this is most under use medical technology and surgical technology of the advanced in this day and age. Epilepsy surgery is most under use technology. So we should be using more, we should be helping more people if they can come to a level 4 or any epilepsy center.
How many patients come out be seizure-free and then what’s the risk?
Zafar: I think of as an odyssey, the patient has to go through this journey, and then we walk with them through the path with our patient. So it is not like when you talk to them first time is get ready for surgery, go to work. It take at least a year or so to get all the testing to get them convinced about and then take their fear out of the surgery to get to that. Two, in terms of the risk for the surgery. So this is, I will say that this is a very complex and advanced procedure. It is done by the neurosurgeon in the advanced facility like here. If the procedure is done with experienced surgeon in the experienced facility that do this a lot, then this is a very safe procedure. Children do roughly 1 or 2% complication. However, this is a very complex surgery, it can have a complication in which you can lose completely that function on that part of the body. You can actually die on the operating room, but the point is if you’re doing in a place which have done a lot, which have expertise like Duke University or other level 4 epilepsy center, then these procedures are relatively safe in a good hand. In terms of the success rate, how many children do well, so hemispheric specifically has a very high success rate, high means, 70-80%. This is very high in epilepsy world, meaning that out of 10 children who get surgery, eight or nine will not have seizure, will not have any medication, will be like Ela.
And the younger the better, right? Can you just touch on that one more time?
Zafar: So I think one of the fascinating thing about my job is I see children as they grow, I see children as the brain grow. And at the same time, I see how their epilepsy grow. The advantage of being a child or working with the children is their brain is still growing. When the child is born, he or she cannot talk, he can see, but over the time it learned. So we use this what we call plasticity to our advantage. We catch the children before they actually learn a skill or learn a language and we do the surgery before. So when they are ready to learn a language, they don’t have a seizure and they learn it. On the other hand, if we wait till they learn a language, which is around four or five years of age after that, doing a surgery on those children will get even harder, because now the function is fixed. So the plasticity or the brain itself molding, brain is able to change the direction. It only happen with the younger brain. And as the epileptologist, as a neurologist, as a neurosurgeon, we use that to our advantage. And that is again, message we want to pass. Earlier surgery will have better outcome. Earlier surgery will have less chances of morbidity or the risk, because you’re using the brain plasticity to your advantage.
An age cut off?
Zafar: If you have to think about the language, we usually learn a language within the first 3-4 years of life. Mean the plasticity of language is 3-4 years of life. If you’re talking about the hand and the leg function, that is within the first two or three years of life when we started to walk. To answer your question, each set of function has different plasticity, different timeline, language develop differently, vision develop differently, hand develop differently. So earlier we do that, we can cash before any of the skill is developed. The later we go, then we started losing the skill that are already formed and then we missed that critical part. In a typical- in the journal, I will say earlier the better, but before seven and five years of age is the most ideal time to do surgery.
END OF INTERVIEW
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