[MUSIC PLAYING] Hello, and welcome to the University of Chicago Medicine At the Forefront Live. Nearly half a million children in the United States have epilepsy. Epilepsy can be challenging, because there are multiple causes and factors. Dr. Doug Nordli and Dr. Julia Henry are with us today to discuss pediatric epilepsy, its causes, and its treatments.

And remember, we're taking your questions. So start typing in the comment section, and we'll get to as many as possible today. As always, we want to remind our viewers that our program today is not designed to take the place of a medical consultation with your physician. Let's start right off with each one of you, and I'll have you introduce yourselves, and tell us a little bit about yourselves, your areas of expertise, and what you do here at UChicago Medicine.

All right, so I'm Julia Henry. I'm one of the pediatric epileptologists here at Comer Children's. I have a special interest in difficult-to-treat epilepsy and epilepsy surgery. And thanks for having us today.

Great, yeah. Appreciate you being here. Dr. Nordli?

Hi, I'm Dr. Doug Nordli. I'm also a child neurologist and epileptologist, and like my colleague, Dr. Henry, specialize in treating patients who have epilepsy and oftentimes hard-to-control seizure disorders. I'm also Chief of the Division here at the hospital and equally pleased to be here.

Great. So let's just start off with kind of the basics. How do you spot epilepsy, particularly in a child? I think a lot of parents will be watching this, and that will be one of the questions that they have right off the bat.

Yeah, absolutely. Generally, the way we spot epilepsy is by the appearance of unprovoked seizures. So if there is a seizure that's not caused by something like fever or trauma, it's occurring out of the blue, and it repeats itself, it occurs a couple of times, then we call that epilepsy.

So what's the difference just between, you know, you see seizures at times and then epilepsy. How do you differentiate? I mean, I think a lot of parents, again, will look at one and maybe confuse one for the other.

Sure, so anybody can have a seizure, but epilepsy is when you have a predisposition to have seizures without an obvious provoking cause, as Dr. Nordli mentioned, like without a fever, infection, or trauma.

And the seizure, exactly, is the event that's due to a sudden abnormal discharge in the brain. And when you're at risk for repeated seizures, then we call that epilepsy.

So the brain is, and again, I'm simplifying. I'm clearly not a physician, but the brain is-- electrical signals are very important as to what happens in the brain. And is that kind of what's going on with epilepsy, or are there other factors?

You're absolutely right that our brains work on electrical signals. That's how we coordinate areas of the brain and process information. And that's exactly what happens and what can be so disruptive about seizures and epilepsy, is that momentarily interferes with that normal electrical activity.

And I imagine it's very frightening, obviously for the child, but for the parents as well when something like this happens. And what would you tell a parent if they see something, a seizure or something with their child that they don't think is quite right? What should they do?

Well, I guess it depends on the situation. If it looks like an emergency, where your child looks like maybe they're not breathing or the episode's not stopping on your own, then you want to seek medical attention right away, call 911. If it's an episode that stops, and your child kind of wakes up and comes back to normal, call your doctor and make an appointment to see your primary care doctor. And it's always helpful if someone can catch it on video, because that can be worth a thousand words, that picture.

Interesting. So if you actually observe a seizure, it helps you with your diagnosis.

It can. So if you don't have a phone, just try and remember what you saw, so you can tell the doctor the next time you speak to him or her. But if somebody is around with a smartphone, that can be a huge help.

So is there anything specific that a parent should look for when they're there observing?

Well, I think Dr. Henry's advice is the best, is that there are a variety of things that we look for. And the more times that you've seen a seizure, or, and heaven forbid your child had a seizure, usually the better people are describing what they're seeing. But it's like you were saying. It's very frightening and often overwhelming. So it's not uncommon that the first few times, people are just preoccupied about something terrible is happening to my child, and they don't recall the details.

Part of our job is to help them, is to take them through those events and kind of go through it somewhat methodically. And it's amazing sometimes, even when people have been kind of traumatized, if you let them take their time and go through the event, we can extract a lot of information from that. And if it happens repeatedly, the phone is an amazing device to capture it.

I'm so glad you brought that up, because that would never be-- I wouldn't have thought of that in a million years. And I would be, unfortunately, and I hate to admit it, but I would be the parent that would be panicking and probably not observing anything. So it's great, great advice. I'm glad you said that, because I think that will be helpful to a lot of parents. And we do want to remind our viewers that we are taking your questions live, so just type them in that comment section. We'll try to get to them as quickly as possible.

We have our first one right now, in fact, from a viewer who's asking, can you explain why my nine-month-old son is taking, is it Vimpat-- I'm not sure if I'm pronouncing it correctly-- when everywhere I see says four years and older? So they're concerned about the age and the medication.

Yes, well, thank you for that question. And what we'll try to do with questions, by the way, is we'll try to avoid getting too specific, as you might understand. But you bring up a very, very good point, which is that a lot of the medicines that we use in pediatrics and also in pediatric neurology are technically not approved for that use in the age that we're using them. So these medications often get approved in adults. It takes some time before additional approval goes down to children.

But over the years, you know, decades, we've gotten used to this trend, and so we know how to use the medicines very safely. We have good guidelines that have been developed over time. So it's a good question. There's a lot of medicines that you'll see that technically are not FDA approved for use in that age.

And I imagine a lot of parents are, you know, they're concerned, obviously, because they're concerned about their children's well-being. So if they're talking to their physician, they should be OK.



So what are some of the causes of epilepsy in children? What makes this happen, and is there a way you can prevent it?

So epilepsy can be caused by many different things. So we divide it into two big categories-- acquired epilepsy, so that happens to children who had a brain infection or a stroke or some sort of traumatic injury that, you know, if you started out with a normal brain. Another significant cause of epilepsy are genetic or inherited disorders. Not all genetic epilepsies necessarily have to have a positive family history or other family members for that child to have a genetic epilepsy.

And then another big category is abnormalities in the brain that the children are born with. So if maybe part of that brain didn't grow right in early development or has some scar tissue on it that can predispose that child to have seizures.

You talked a little bit about family history. If you have a family history of epilepsy, are you more likely to have a child that has epilepsy?

Yeah. Having a first-degree relative, meaning someone close by you in inheritance does increase the chance of your child having epilepsy. It's not dramatic, and we should say, though, that the majority of children, even born to mothers who have epilepsy, will not have epilepsy. But we've recognized that it's a contributor. And technically, it's usually polygenic, meaning it's usual multiple genes that come together to make someone susceptible. So that's why we don't see, generally speaking, a lot of people within a family suffering from epilepsy.

Dr. Nordli, I read an interview with you that I thought was fascinating, and you talked a little bit about some of the changes over the past decade in treatment and diagnosis. And like all of medicine, obviously, things are changing constantly. But epilepsy is one of those areas where there are some rather dramatic changes. And, in fact, in the article, and I thought this was kind of neat, you said it was an exciting time to be doing this for a living and helping children. Can you expand on that a little bit?

Absolutely. It is definitely one of the most exciting times. I've been in epilepsy for the past 30 years, and I honestly would say this is one of the most exciting times. Part of it is because of the technology that's available in terms of our ability to diagnose epilepsies that previously we had a clue, but we didn't know for sure what was going on. And now we're getting much more definitive information. So we can sometimes actually precisely pinpoint what the cause is. And that's been very satisfying.

The hope with that is that, and the importance of finding out the cause, is that hopefully, more and more, that will lead to specific treatments, the notion of precision medicine, where specifically, we'll alter our treatment, depending upon what the specific cause is in that child.

And Dr. Henry, do kids ever grow out of this? I think that's, again, a lot of times a parent's wish is that if their child has a challenge, that hopefully they'll just grew out of it. Does that happen with epilepsy?

That can certainly happen. It definitely depends on the type of epilepsy that you have. So many of the inherited or genetic epilepsies are things a child can grow out of. Even some epilepsies due to scar tissue or abnormalities in the brain structure, you can grow out of over time. Or the brain can learn to overcome the seizures and keep them under control. But it, again, it depends on that type of epilepsy that you have.

When you talk about the brain learning to kind of overcome some of these things, are there therapies that you do with patients to help them along those lines?

We, you know, and this is the importance of getting to things early on and trying our best to get the right treatment, we believe that if we can help to control seizures, that we can sometimes interfere with the whole process of epilepsy, so that if we get it right at the start, we figure out the diagnosis, we get the child on the right treatment, we believe we maximize the chance for them to go into remission or to grow out of their epilepsy.

Interesting. We want to remind our viewers, of course, we're taking your questions live on the air. So if you want to ask a question of one of our experts here, just type it into the comments section, and we'll get to it as quickly as possible. So what age do-- usually you start noticing epilepsy with children?

It has a tendency to be the highest incidence, we call it, or most common in infancy. And if you looked at a curve, say, of like the age of the patient and the chance of having epilepsy, it's very high, actually, in the first year of life. And then it goes down, it drops down, but it's still high, about 53 per 100,000 in most of childhood. And then it kind of levels off in adults, drops to like half that rate, and then picks up again above age 60 and 70.

So you can be diagnosed at that late of a stage?





Yes, in fact, we used to call it a U-shaped curve and said that the incidence was highest in infants. And now as people are getting older, and we have some wear and tear, it looks like we're getting a J-shaped curve, where the incidence is even going up in the elderly.

Yeah, well, that makes sense as our society ages, and we see more things like that. So if you do catch it early, Dr. Henry, what can be done? Are there things, proactive measures, that you can take?

Sure, so if you catch it early-- well, first of all, you want to make sure you get in to see a neurologist or an epilepsy specialist as soon as you suspect the diagnosis of epilepsy. And then there are some epilepsies that you don't need to immediately treat with medication. But for the most part, you want to get the seizures under control. And for the vast majority of patients, that's going to be with the traditional anti-seizure, anti-epileptic medication. And so we have a motto in neurology in general, and epilepsy as well, that time is brain. So we want to be very persistent about getting those seizures under control.

Are medications pretty effective as far as treating?

So they can be. About 2/3 of patients, seizures will come under control with the first medication we try. There's some variation in that number, depending on the cause of the seizures. And about a third of patients will still have seizures after the first trial of medication. And those cases, we try adding medications or changing medications or trying some non-medical interventions, like diet therapy or surgery.

Interesting, so what are some of the best ways to diagnose epilepsy early on. Are genetic tests helping? That's, again, I think, a new area.

They are. I would say that-- I'm just echoing what Dr. Henry just said-- that one of the best ways to get a good diagnosis is to go to someone, who's had some considerable experience and expertise. And that would be, typically speaking, a neurologist, particularly child neurologists nowadays and epileptologists. And there are quite a few, thankfully. There are many more of us than there were years ago, so it is possible to get an appointment with a child neurologist/epileptologist usually pretty quickly, particularly if you're seeing this as a beginning, what looks like a new start to epilepsy.

So probably the most important test that we use, the best way that we diagnose, is with the brainwave tracing, the so-called EEG, or Electroencephalogram. That test has been around for a long time. We know it really well. And it's our most helpful test in exactly characterizing what kind of seizure disorder it is.


And I just wanted to add one thing, that if you think your child has epilepsy or seizures, and you're having to wait a long time for an appointment, be persistent. Talk with the pediatrician, call the clinic. And if they're having convulsive seizures frequently or that lasts a long time, you could even go in through the emergency department. I know when I get called sometimes, that a patient couldn't get an appointment for several weeks or months, and they may have seizures, I'll make sure that they can get into clinic to see me or someone as soon as possible.

Absolutely. So genetic testing, we were talking a little bit about that, very expensive, oftentimes not covered by insurance. Any thoughts on how to make that more accessible to people who need it?

Fortunately, the costs of the genetic testing are dropping more and more. So the technique that we use is called next-generation sequencing. And this has become automated so that the cost of the procedure, thankfully, is going down. So this is definitely the future. It'll be our prediction more and more. Insurance companies will approve that, because it's so helpful in pinpointing the cause. We don't need to do it in the majority of the children.

And we've learned which children are at highest risk of having a mutation that we can identify with this testing, so we can be selective and not need to test everybody. And when we do that, we have high rates of getting positive results. And I think, increasingly, insurance carriers, labs, are recognizing that that's the case. In many circumstances, you can combine this and do it in a lab in such a fashion that you keep the costs low and the turnaround time very quick. So across the country, we're seeing improvements in availability for testing.

And I would imagine that with this type of testing, it obviously helps with treatment, and so it may bring the cost down in the long run.

Absolutely. If you think in years past, you know, if we didn't know what was causing the epilepsy in a child, maybe we would repeat an MRI scan or something of that sort. That's 10 times the cost of the genetic testing. So if we can get a specific answer, and sometimes the turnaround time can literally be in weeks or months, we can definitively answer the question. Then we don't need to do other tests that are less likely to give us a good answer and actually more expensive.

So are there different kinds of epilepsy? I mean, there are newer medications, of course, too. But what are some of the different types of epilepsy, and then the follow-up question I have to that when we talk about medications, people have mentioned cannabis. And I'm kind of surprised we haven't had that one written in yet, but I'll let both of you field this one.

Yes, so there are many different types of epilepsy, as I alluded to earlier. There's two big categories. There are acquired epilepsies, where someone starts out with a healthy, normally-developing brain, and then some injury occurs. And then there are the big category of genetic or inherited epilepsies. There's some epilepsies, as we talked about, that children start in childhood, and then they typically grow out of. And then there are more severe epilepsies that cause not only seizures, but developmental problems, you know, cognitive motor problems, things like that.

And there are even different types of seizures, right?

There are. And so based upon the seizure, and as Dr. Henry's saying, the type of epilepsy, we will tailor the treatment accordingly. And sometimes, for example, if we get a genetic test result that back, like-- I'll take an example that a child can't get enough sugar into the brain, then we figured out how to cleverly modify the diet to correct for that. And that kind of dietary change is curative, actually, in terms of stopping the seizures in that circumstance. So that's an extreme example, but there are many others, where we've learned which treatment tends to work the best for a particular type of epilepsy.

Yeah, and I alluded to this just a moment ago, that cannabis, that's something that people talk about when they talk about epilepsy. Is that legitimate or not?

Oh, yeah. Dr. Henry gave a talk on that recently, yes.

So this is a field of medicine and neurology and epilepsy that's exploded, really, in the last five years. Because of the enthusiasm in the community about the potential for medical marijuana or cannabis, or specifically, the compound, cannabidiol, which is a single component of the cannabis plant, there's been much more research. And so we actually have a few very well-controlled clinical trials, where the CBD oil, which again, is that one single molecule from the cannabis plant, is compared to a placebo in children with difficult-to-treat epilepsy or uncontrolled seizures and actually outperformed the placebo and gave these children, who do have very difficult-to-treat epilepsy better quality of life and reduced seizure burden, and in a few cases, sent the seizures into remission.

So I see patients who would be candidates for treatment with the CBD oil. And now there's a new proprietary preparation of CBD oil that's available for prescription. I also see a lot of patients who are coming in with either newly-diagnosed epilepsy or maybe seizures that are controlled on a conventional medicine, who are interested in trying it. We don't have good data or clinical trials about that yet, so I just urge caution and good communication with your doctor if you're thinking about those options for your child.


And the CBD, as Dr. Henry was saying, is while it's derived from marijuana, it's separate from the THC, the other ingredient that is the reason that people recreationally use it to get high. So the CBD is another component of it, but it has more the medicinal qualities.

So Dr. Nordli, just a minute ago you talked about diet and how important diet is. Ketogenic diet is something that we hear a lot about. And we hear it oftentimes linked to epilepsy and help with epilepsy. Talk a little bit about that, and how much does that help?

It helps a lot. One of our colleagues, Dr. Henry and my colleague, Dr. Phitsanuwong here at University of Chicago, has a ketogenic diet clinic that he's been working on. And the reason that you see these ketogenic diet clinics is that it's very successful. It was pioneered in the 1920s and 1930s. And across the decades, it's continued to be an important part of our treatment regimen.

To distill it down, it's very simple. It's a diet that is low in protein and relatively low in glucose, or carbohydrates, I should say, and high in fats in the standard form. And that does a variety of things that changes the body chemistry to make it very resistant to seizures. So it's a very prominent effect and can be safely done. But the full ketogenic diet needs to be done under careful watch with a physician and a dietitian that's knowledgeable about the ketogenic diet.

And what is it that causes the resistance to seizures? Do we know that?

We do. We have a lot of information about what are the properties in the ketogenic diet that help to fend off seizures. And I think one important point and one of the attractive aspects to the diet is that many of our medications cause some degree of sedation. But the ketogenic diet actually increases brain energy, and that increases the ability for the brain to fight off seizures. So it's nice in that it doesn't cause the same kind of sedative effects that we can see with many medications.



I have another question from a viewer. And this one is how long, ideally, would you want to be seizure-free to reduce medicine?

Yeah, the rule of thumb most neurologists go by, two years of seizure freedom, that if you have two years of seizure freedom and you have an EEG that's normal, your chances of being seizure-free after weaning medications is about 70%. And you want to wean the medications carefully, because some medications, by themselves, if you withdraw them, can cause rebound seizures. So--

So you can actually exasperate the problem if you do it quickly.


And many times what we'll do is once someone has been seizure-free for, say, a couple of years, is if we're not 100% certain, we can double-check the EEG, the brainwave test and then see if that looks clean, that the abnormalities are resolved, then it's kind of a green light that we can proceed with the withdrawal of the treatment.

Let's talk about surgery a little bit. This is another interesting area, particularly with some of the advances that have been happening in the past few years. Laser ablation is one thing that you spoke about in the article that I referenced. Tell us a little bit about the surgeries that are available, how they work, and specifically, we can talk about laser ablation, too.

Yeah, do you want to start, Dr. Henry?

So surgery has been used as a treatment for epilepsy for many, many decades. And it can be both curative and palliative. And so it's something to think about anytime you or one of my patients has refractory seizures. So refractory means still having seizures, despite two trials of medications at solid doses. So surgery, there's many different types. The kind of newest and most exciting type that we're working with here at the University of Chicago is laser thermal ablation. That's guided by the MRI scanner.

So what happens for laser thermal ablation is there's a lot of planning that goes into it beforehand to make sure we know where the target is and where we believe the seizures to be coming from. And then we plan the surgery with our neurosurgeons, our neuropsychologists, our EEG techs, so they everybody is on board with the plan. And then we sometimes record, try and catch seizures on what we call an intracranial EEG, where electrodes are actually inserted into the brain to look at the seizure activity.

And then from there, once we are very confident about the target, we can insert a thin, sort of spaghetti strand-sized fiber through a tiny hole in the skull into the area where we think the seizures are coming from. Then the person is transported to the MRI scanner, where we can actually watch that probe heat up and burn the tissue in real time. So it's very safe, and we can make sure we're only burning the target and not burning other important structures. And that's it. And then they usually the patient recovers in one to two days and can go home from there.

It's really a fantastic new type of therapy. And we've been talking about it as we have these very active conferences here, where we're discussing cases. It's really markedly changed our approach, and I think in very good ways, that it's opened new avenues for us to consider, doing things that we couldn't do in the past.

Maybe the viewers are curious, like we are often asked, oh, why would you ever remove a region of the brain? Won't that harm the person? And this is really key, as Dr. Henry was saying, when we identify that area, it's generally an area that's damaged and scarred, so it's not going to be missed if it gets a ablated by the laser or removed. And the whole important thing of the surgery is to just remove that area that's damaged and not contributing to anything good and to leave everything else untouched.

The key with the laser is it is very pinpoint and very exact, and you ablate the smallest area that you need to. And the other beauty of this is, too, which I think is very interesting, is it's surgery on the brain, but you're not opening the skull. And the recovery time, as you mentioned, much, much, much quicker.

Yes, it's very elegant. And as one of our surgeons, Dr. Warnke, will say, too, is that it adds another element of precision. Because as Dr. Henry is saying, you can watch this in real time. So you can do a test dose, see precisely the area that's going to be ablated. And so it's kind of pinpoint precision as opposed to when you're in an operating room, tissues can shift a little bit. And even though the information is co-registered to an MRI, you can have a little bit of shift. There is no shift. In this case, it's right where the target is.

Interesting. So epilepsy can cause damage to brain function. Is there anything that can be done to help prevent that or stop the damage?

I think early treatment is key, identifying seizures early, getting in to see a neurologist or epileptologist and getting them under control with whatever medication or diet, or therapy works best for you.

Yes, and I think the two things to underscore, and we completely agree, is that we're concerned, particularly, about long-lasting seizures. So we would probably both say if your child's being treated for epilepsy, then it's a good idea to have an emergency plan or a rescue plan. So what do you do if, heaven forbid, there's a prolonged seizure lasting many minutes? Then it's a good thing to talk to your doctor, nurse practitioner, about a rescue treatment that can be administered to stop those, because that's a particular seizure type we're worried about causing damage.

Well, that's excellent you brought that up. And my question is what is a prolonged seizure? Is there a cutoff? Is a 30-second seizure long enough, or what do you mean by that?

So we generally will say the most seizures, as horrific as they seem when you're watching them, and particularly if it's a child, you know, somebody you know, you love, it seems like an eternity. But most of the time, they actually stop within two minutes. So if you sit there and actually time them, you'll see that they'll stop. And we'll sometimes give that advice to parents to time them.

We usually say if it gets beyond two to five minutes, start thinking about the rescue treatment. They administer it somewhere in that five- to 10-minute window, because seizures are kind of like snowballs. If you can get them early on, you can more easily stop them than if they keep building.

The time period where we think damage occurs is probably more on the order of 90 minutes. So it gives us a lot of leeway time to safely stop the seizures before there's any microscopic signs of damage.

All right. We're about out of time. We have one question left, though. Can a child be cured of epilepsy?

Absolutely. Absolutely, and that's our goal. Our whole mission is to cure epilepsy so that we don't have seizures, we do not have side effects, and we have normal brain function. That's the whole reason we exist.

Well, that's wonderful news for parents, then. You guys did a great job.

Thank you.

Thanks for having us.

I appreciate you being on.

Yeah, thanks for having us.

That's all the time we have today. We want to thank you both for your help with the program. If you want more information about epilepsy or any other disease or condition, please visit our website site at uchicagomedicine.org, or you can call 888-824-0200.

Now make sure you watch next week as we discuss prostate health and treatment options. We'll take your questions and have our experts answer as many as possible. That's next Tuesday, December 11th, at 12:30. Watch our Facebook page for more information on that important program. Thanks again for watching At The Forefront Live, and have a great week.

No Seizures, No Side Effects

At the University of Chicago Medicine Comer Children's Hospital Pediatric Epilepsy Center, this is the goal our experts set for every child we treat.

We understand how important it is to tailor epilepsy care to children and their specific needs. Because their brains are still growing, children are more vulnerable than adults to the harm that uncontrolled seizures can cause.

Our experts have success reducing and eliminating seizures in children, often helping children who other physicians have deemed “untreatable.” Even if you've been told that your child has drug-resistant, intractable or refractory epilepsy, we encourage you to bring your child to our experts at Comer Children's.

Why Choose Us for Pediatric Epilepsy Care?

Our dedicated pediatric epilepsy specialists work together to develop individualized treatment plans based on the type of seizure your child is experiencing, the underlying cause of the seizure disorder, your child's medical history and other relevant criteria. We work to balance seizure control, improve learning and increase quality of life for every patient.

When visiting Comer Children's, you can expect a unique and positive patient experience. Our doctors listen to you and your child, making sure you understand and are involved in decisions about your child's care.

Our Comprehensive Epilepsy Center brings together our pediatric and adult epilepsy centers — both nationally recognized as Level 4 centers — into one integrated system. So with us, your child can transition seamlessly through exceptional pediatric care into leading-edge adult epilepsy care.

As a Level 4 epilepsy center, our Pediatric Epilepsy Center has been awarded the highest classification granted by the National Association of Epilepsy Centers (NAEC). It means we provide the highest level of medical and surgical evaluation and treatment for children with complex epilepsy.

Our epilepsy team has made important breakthroughs. For example, we are the first facility in Illinois to offer MRI-guided stereoelectroencephalography (SEEG) and laser ablation surgery.
We are one of a handful of centers offering non-invasive monitoring techniques that combine complex mathematical equations with MRI images and EEG data to create 3D images of electrical activity in the brain.

Experts at Comer Children's offer effective treatments that are not available from community neurologists, including some therapies that are not available at other epilepsy centers. These new treatments are backed by our extensive research and clinical trials. Our carefully individualized drug regimens, sophisticated seizure monitoring and comprehensive surgery plans set us apart from other centers. We are one of the most experienced pediatric epilepsy centers in the nation.

Our multidisciplinary team specializes in the use of medication, ketogenic diets and surgery to control epileptic seizures in children.
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  • Our surgeons have the experience and expertise to perform pediatric epilepsy surgery on children at a younger age than at many institutions.

Our team has extensive experience in minimally invasive surgical techniques for the treatment of gelastic epilepsy, including stereotactic radiosurgery and laser ablation.

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