In this episode, we talk with our guest Dr. Nilesh Kurwale who is an epilepsy specialist based out of Pune, India. Dr. Nilesh explains and defines epilepsy, symptoms of epilepsy, and what are the different ways to treat epilepsy.

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Learn more about Dr. Nilesh Kurwale at:
https://www.rxoom.com/pune/doctor/dr-nilesh-kurwale-neurosurgeon

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Transcript

What is epilepsy, its symptoms and treatment

A talk with Dr. Nilesh Kurwale

Speaker: Mr. Vivek
Hello, this is Vivek Dubey. Welcome to Dr. Talks. Here we chat with best doctors about the diseases and conditions they treat. Hi Friends, today we have with us Dr. Nilesh Kurwale who is a neurosurgeon based out of Pune. Dr. Nilesh is a specialist Epilepsy surgeon. Welcome Dr. Nilesh.

Speaker: Dr. Nilesh
Good afternoon, Vivek.

Speaker: Mr. Vivek
It would be great to start with a short brief background about yourself and your journey in epilepsy treatment.

Speaker: Dr. Nilesh
Yeah, so basically, I am a neurosurgeon, and I got my degree or residency program from All India Institute of Medical Sciences in New Delhi. After that I practiced as a general neurosurgeon in Pune, Aditya Birla Memorial Hospital and during the general neurosurgery practice, I discovered my passion into treatment of epilepsy. So, I went back for a fellowship again in epilepsy surgery at All India Institute of Medical Sciences with Dr. Sarath Chandra and after that I spent time with Dr. Ashwini Sharon, who is a professor at Jefferson, Philadelphia. After coming back, I started a small scale epilepsy surgery program at the Deenanath Mangeshkar hospital Pune, which is a 1200 bed hospital, not for profit organization in Pune and now from the staff of five people in the last four years now, we are a big department of 25 people. And we are probably among the first five programs catering to epilepsy surgeries in India.

Speaker: Mr. Vivek
Great, would you be able to define for us what is epilepsy. There are different perceptions about epilepsy within the society. If you can share some of the basic reasons of epilepsy and what is epilepsy.

Speaker: Dr. Nilesh
Okay, so epilepsy is a kind of spectrum of disorders. It is a large spectrum. And mainly epilepsy is also in a vernacular language known as Mirgi. So basically, what exactly is epilepsy? Epilepsy means most of the people around us are who have seen epilepsy before they will see a thrashing of limbs and then urination and then frothing of the mouth. And this is the quite characteristic symptoms or features of epilepsy. As normal person or layperson understands it. But there are many varieties of way epilepsy manifests like simple acts of spitting on someone, simple act of losing consciousness simple, maybe two or three minutes lapses or a lapse of 15 to 20 or seconds just staring and nothing else. So, all these things also constitute epilepsy. So epilepsy does doesn’t mean it has to be associated with thrashing of limbs or something, but definitely epilepsy most in most of the epilepsies the consciousness or the connect of the person with the surrounding is lost maybe even for a short span of seconds, few seconds too few minutes and that is why epilepsy is little dangerous now.

Speaker: Mr. Vivek
Yeah, but is it something which occurs from birth or it can happen later in life?

Speaker: Dr. Nilesh
So basically, epilepsy there are two main divisions of epilepsy as we can see, one is like Idiopathic, are we where we don’t know where exactly epilepsy is starting from or where exactly it’s coming from and the other one is symptomatic. So depending on the cause of epilepsy, it can start from the birth or it can start later in life. Like suppose you have some infection during pregnancy or mother or a kid, he may come up after birth, he may just have epilepsy during the first few days of life, or the most common causes, probably low blood sugar, after birth can cause epilepsy. So, there are many causes of epilepsy and depending on which cause it is, you can say whether it can be from birth or acquired later in life. Like in case of tumours, tumours you can have after, I mean anytime during your life and many tumours present with epilepsy. So, epilepsy can be from birth as well as from the later on in your life.

Speaker: Mr. Vivek
Does epilepsy cure by itself or patients need to go for medical help after a certain point of time, or it can get cured by without any help also.

Speaker: Dr. Nilesh
Now interestingly, epilepsy is like a fever. What I normally say, epilepsy is like a fever, so many of the epilepsies they generally start in early childhood years. And as we understand in case of fever, most of the fever we have is because of the virus or viral fever. And most of the viral fevers are self-limiting in nature. And even if you do not take paracetamol or anything, the fever will subside over a period because it’s a self-limiting viral fever. The same analogy can be given to epilepsy as well because many times at least at least 50%, if not more epilepsy are self-limiting in nature. They start somewhere in your early childhood years and over a period of three to four years, they just disappear on their own. Without any treatment, it can happen. They can disappear at least in 50% of cases. Yes, they disappear. But the thing is when you have a fever you just do not let the fever remain; you will always take a paracetamol because you do not want a fever. Whatever the cause of the fever is, you will want to get rid of the fever. The same thing happened with epilepsy also, that you do not want convulsions. You do not want this seizure attack. So, whenever epilepsy starts, during the first episode, nobody starts a treatment. But after a second episode, the doctor will normally start a treatment on the seizure episodes, because even if this epilepsy may be self-limiting, but you do not want even a single seizure, because that can be detrimental. So that is the logic of starting antiepileptic treatment. For three to four years, say if you go to any doctor with epilepsy they will always say you take this medicine for three to four years and mostly we will take it off this medicine after three to four years once you don’t have any convulsions. So, what is the meaning of that? Just like the fever, the paracetamol only controls fever and not it is cause. Same thing with epilepsy antiepileptic medicine just controls the seizures, it does not affect the source of it or the cause producing epilepsy. So, it is like a symptomatic treatment.

Speaker: Mr. Vivek
But say after three to four years it gets cured, it means that the body will cure itself but till then the medicine helps in preventing seizures, is that understanding correct?

Speaker: Dr. Nilesh
Yes, you do not want seizures during that three to four-year time, when it automatically will subside? Just have a simple analogy with a fever. So, you don’t want a fever, even if you know that in another three years it is going to go away. You do not want it. So, you take paracetamol. So, paracetamol is not the treatment for the underlying cause. It is actually the treatment for the fever the same way the epileptic drugs are the treatment for seizures. It is not the treatment for the underlying cause. But just because epilepsies are self-limiting in nature. Many people believe that antiepileptic drugs cured their epilepsy.

Speaker: Mr. Vivek
What happens in cases where the anti-epileptic drugs are not able to cure the epilepsy? What should the patient or his caregivers take the next step?

Speaker: Dr. Nilesh
Now imagine the thing that viral fever does not subside after the third day. You have taken paracetamol, but viral fever does not subside. What will you do? You will go to a doctor. The doctor will probably say the virus may not be the cause of your illness, fever and we will investigate with a blood test and urine test. To look for the root cause of fever, and if he finds any bacterial infection, then we will give antibiotics. So antibiotics in case of fever is actually the treatment for a root cause of fever in the same analogy is extended to the treatment of epilepsy when your anti-epileptic drug doesn’t work, or if it is not controlling the seizure or you despite having antiepileptic drugs, your epilepsy continues, it means that probably it is not the type of self-limiting epilepsy there might be something else. So here now at this juncture, we need to think about the root cause of which is producing these seizures and there might be any number of things which, so another note the first 50% of the ellipses are self-limiting ones, but the other self is another type of epilepsies. Like if you grossly classify epilepsies the first thing is idiopathic ability. See idiopathic epilepsy means most of the time, it is self-limiting in nature. Second, the frequency of idiopathic epilepsy seizures is extremely low once in a year or twice in a year. And third, it will respond to only one drug. If you start one anti-epileptic, drug and patient will be seizure free for another three to four years. So, these are the characteristics of idiopathic epilepsies or self-limiting epilepsies. However, when you think about when your drugs doesn’t control your epilepsy meaning the chances that this epilepsy might be of the other type that is remote symptomatic epilepsy or substrate positive epilepsy what’s in a layman’s term it can be called as. Meaning there is some cause or a structural abnormality present in your brain, which is causing short circuits and giving rise to this kind of epilepsy. So, the characteristic of this epilepsy is it will not respond to drugs. Second, the frequency of the seizure will be high and third, despite adding two or three anti epileptics, it will not subside. And fourth, as there is a structural cause, or a root cause identified in such epilepsies unless you address the root cause you are not going to get rid of this epilepsy and this will continue lifelong. So, these are the things which need to be understood as a patient of which type of epilepsy you might be looking at.

Speaker: Mr. Vivek
Okay, that was really helpful Dr. Nilesh. And if it is the epilepsy of the second kind which is not self-healing or how a patient should plan his or her treatment.

Speaker: Dr. Nilesh
Now, let us go from the start. So whenever you have a first episode of seizure, you go to the doctor. So on the first episode of seizure, doctors generally do not start any treatment because it can be because of anything. So the convention is not to start anything, but if you have a second episode and then the neurologist or physician gets the EEG [electroencephalogram] done to confirm that you have epilepsy. Once you are diagnosed to have epilepsy, then the most appropriate drug considering your clinical symptoms and findings in the EEG will be started generally by a neurologist or a paediatric neurologist. Both of these doctors specialize in the treatment of medical epilepsy. So once you’re diagnosed, it is their job as a neurologist and a paediatric neurologist to diagnose epilepsy and to start the appropriate medical treatment. Now, once you’re started on a medical treatment, the 50% chance that probably it might be a self-limiting epilepsy and it will be just controlled, but if it doesn’t happen, and you throw seizure, during the time, you’re already on the drug treatment, then in that instance, the second drug is introduced or the drug is changed to the other drug or a second drug is introduce so you will be on either on a polytherapy meaning two drug or on a second drug mixture. So, if these two drugs fail to treat or to control your seizures, this happens 65% of the time, you will be controlled on drugs. But if you fail to respond to these two drugs, there is a very high chance that there has to be some structural abnormality in the brain. And this thing we call drug resistant meaning to drugs failed, meaning the chances of third drug whatever you add henceforth, third, fourth, fifth, the chances of your epilepsy getting controlled is almost less than 2%. And this has been proven beyond doubt. So here the concept or a nomenclature of drug resistant epilepsy comes into picture, meaning you fail to respond or your seizures do not stop even after putting to appropriate drugs in appropriate doses and you are also taking it religiously, without any compliance issues, and you have an acceptable side effect profile. If all these things all these criteria are fulfilled and still you’re having seizures, then you are a candidate of drug resistant epilepsy. So once the diagnosis of drug resistant epilepsy is established, then the protocol for treatment differs. Here you start looking for that structural abnormality because now you’re beyond doubt you’re convinced that you are not a self-limiting epilepsy because you are drug resistant one right here at this juncture, you will start looking at the structural abnormality that is creating this kind of seizures in you. So then, there are protocols and the first thing here would be the doctor will admit you for something called video EEG. What is video EEG? In routine EEG the first doctor who has acquired your routine EEG he is just 15 minutes easy to diagnose on a gross scale here in a video EEG you are admitted for three to four days in a hospital, where this facility is there and you will be put on EEG for all these days.

Speaker: Mr. Vivek
Dr. Nilesh India being a very vast country with healthcare facilities and their capabilities varies from state to state city to city, as a patient in such a scenario, how should one decide that who to go meet and in which hospital to get treatment started with. What should one look for in a hospital for this kind of pre evaluation?

Speaker: Dr. Nilesh
This kind of pre evaluation is limited to very few hospitals in India and that’s unfortunate story, but you’re inquiring about the hospital or a nearest hospital with a Video EEG facility to your treating neurologist. He might be able to guide you but if you ask me there are five or six big centers across India, including the Deenanath Mangeshkar hospital Pune, All India Institute of Medical Sciences, New Delhi, Sree Chitra Tirunal Institute for Medical Sciences in Trivandrum, Amrita Institute in Kochi. And there is I think Nizam’s Institute in Hyderabad. So, basically, Deenanath Mangeshkar hospital is the only not for profit hospital apart from the central institutes which have this kind of large scale facility for video EEG.

Speaker: Mr. Vivek
So for a common person one thing is to look for a hospital with a video EEG facility, right?

Speaker: Dr. Nilesh
So yeah, the treating neurologist should be able to guide you to a video at a hospital with a video EEG at the facility. So, let us understand what is EEG means and why should we get video EEG done so once you are in a drug resistant candidate the resistant epilepsy in video he will be admitted for three to four days your EEG will be put and you will be under a continuous monitoring of a video camera for 24 hours, 24/7 for three to four days and you should be able to do your routine there because the facility is made in such a way. At the same time you will be asked to reduce your medicines so that you provoke, provoke you to have seizures when you are admitted in video EEG facility, your drugs are reduced, because we want to study in detail how your seizures looks like meaning which hand goes first with the leg, leg goes first or mouth go, because this is very important to understand which area of your brain the seizures are originating from, and what is the quality of seizures are they same every time because these are the essential things to know or to diagnose which area of your brain is throwing the seizures and then second investigation once this is done. se the facilities made in such a way. So why do we need all this thing when you want to characterize now this is little a higher level investigation. So you want to characterize you are really having epilepsy. Second, what kind of epilepsy are they having? What is your EEG in sleep, deep sleep, light sleep, awake state, eyes open and eyes closed. So this kind of data you will need to characterize which syndrome you are having or where exactly the seizures are in your brain might be coming from. The next thing which we would like to do is a high resolution MRI, magnetic resonance imaging are you might be aware of so it is not a routine MRI which you get everywhere with a diagnosis of epilepsy. This is a special MRI, which is based on the findings of video EEG and we will focus on that area only where those your various seizures are most likely to come from and with a very high index of suspicion that have some kind of problem there. Why I’m stressing is because the structural abnormalities causing epilepsy are very settled in nature and they are normally missed on the routine MRIs which are done outside. So, if you ask me my experience 30% of the patients which come to us and we operate upon them will come with a negative MRI report meaning a normal MRI report to come up to start with. So that is the reason we have to get a very focused, very focused spatial epilepsy protocol MRI after your video EEG investigation, and the third parties PET scan. So we generally acquire PET scans again during the same hospitalization to be able to get more information about the glucose utilization by your Brain. Why it is important is because the areas which are supposed to have epilepsy coming from are supposed to be low in glucose utilization. Now, why do we need all these data sets because epilepsy evaluation is a complex decision to make. So we need three or four data sets. So one video EEG where we have an electrical data set and your clinical data set meaning which hand goes first and all that stuff. So that is a one data set to focus on one part of your brain. Secondly, MRI, we again check if the same part of your brain has some abnormalities. Again, with a third data set or a third type of investigation like a PET scan, we again check whether PET is also showing the same abnormality in the same area of the brain, which the other two video EEG and MRI is showing. And one more examination is there that is called a neuro psychological examination. Again, a fourth way of looking at the brain abnormality. So we actually need to do four data sets converge on the same area of the brain, producing your seizures. And that is it. That is why this is a complex kind of evaluation and needs a long time of four days.

Speaker: Mr. Vivek
If I understand it in simple terms, it means a specialist, or epilepsy surgeon or a doctor collects four sets of data points to be very sure where the problem in the brain is right? Is that what you are trying to do collect different data points from different methods and be very sure that this is the area of a brain where there could be some problem because of which epilepsy is emerging. Right?

Speaker: Dr. Nilesh
Yes, yes, you are right.

Speaker: Mr. Vivek
Great. So once a doctor has identified the area of the brain from where the epilepsy is emerging. What would be the next steps once the diagnosis of drug resistant epilepsy is confirmed

Speaker: Dr. Nilesh
We are looking at some structural abnormality in your brain. And all these investigations are focused towards identifying that area. So with a video EEG, MRI, Pet and neuropsychology, we have zero down one area and label that this is the cause of the current epilepsy. Now, the next question to answer is, can we remove that focus without producing any neurological deficits, meaning any problem to the patient and cures the epilepsy because once you find out the structural abnormality, if you can remove it, your epilepsy will go in 90% of the cases and you will be all off the drug and I mean you there is a good chance that it will be off the drug also. So the very purpose of pre surgical evaluation or evaluation of a drug resistant epilepsy is to understand the focus or to zero down the focus which is responsible for that epilepsy once that is done. And the answer of the second question is also positive, meaning we can remove this area without producing any new problem to the patient, then the next line of treatment would be surgery. Once you do surgery and take out that area, there is less than 1% chance of any new deficit or any new problem to the patient . The seizures will go away in 90% of the patients so that’s the kind of treatment or that’s the direction which we take after this pre surgical evaluation.

Speaker: Mr. Vivek
What are the chances of this surgery which is done, where the area of the brain, where from the epilepsy was originating or it was a cause of epilepsy? What’s the success rate of this kind of surgery?

Speaker: Dr. Nilesh
So the surgery has a 90% chance I mean, nine out of 10 people will get rid of epilepsy completely. So 90% chance that patient will never have seizure again and 50% chance that patient may not have to take medicines also, meaning like if you consider a cohort or a group of hundred people with a drug resistant epilepsy and we perform surgery on them, so 90% people will be seizure free, but 50% people will be seizure free and drug free also they are not taking any more drugs. So they’re kind of cured of all this epilepsy thing. But another 40% people might have to take a single drug in a minimal dose than their previous three to four drugs which they used to take before surgery. So they might have to take one drug in a minimal dose for a long time like five to seven years, eight years or even maybe for a lives because but this one drug in a minimal dose do not have any problem or do not have any side effect profile compared to three to four drugs they used to take before surgery. So when we talk about the success rate of surgery, 90% of the people will not have the seizure again. But if you ask me for a complete cure, the chances are only 50% drug free and seizure free 50% seizure free, but on a minimal medication 90%.

Speaker: Mr. Vivek
It’s a very significant percentage in terms of cure, because as you say that 50% would be totally free and another 40% with the help of some drug, they would be free of seizures. Now, that’s great. What in the other 10% of cases where the cure is not happening, or the patient has not responded the way the doctor tried for what happens in those 10% of cases.

Speaker: Dr. Nilesh
So unfortunately, this is still not a perfect science. So with all these four data sets, even converging on one point, and we operate on them 10% of the people fail and they continue to have seizures. So they may continue to have the same seizure frequency or reducing the seizure frequency, whatever, but they continue to have seizures. We call them failures and they will have to unfortunately continue drugs for years together because there is no other way to control epilepsy.

Speaker: Mr. Vivek
And for the 90% of success cases or the surgery does not impact any other area of their brain, right? There is no side effect or impact in their other capabilities.

Speaker: Dr. Nilesh
Ideally epilepsy surgery is supposed to be a quality of life surgery, what we typically call we are not saving someone’s life by doing epilepsy surgery, we are improving his quality of life and by definition of a quality of life is surgery patients should not have new onset deficits. What is the fun if I cure his epilepsy and give him a complete loss of one limb or something that doesn’t make sense? So by definition, epilepsy surgeries are safe surgeries. Epilepsy surgeries are productive surgeries, and unless explained. Otherwise, the chances of getting new deficits after planned epilepsy surgery is less than 1%, meaning one in hundred might develop something or the other. But 99% of it is safe surgery.

Speaker: Mr. Vivek
Oh, that’s really wonderful to hear that or not more than, in fact, 99% of cases the quality of life improves after the epilepsy surgery. So that’s something wonderful to know. And for patients. That’s a huge confidence in the process of epilepsy treatment, right?

Speaker: Dr. Nilesh
Yeah. Yeah, I know it is a highly rewarding surgery. I will say that this surgical treatment of epilepsy is highly rewarding. There is no other way to treat drug resistant epilepsy apart from surgery and thankfully surgeries are safe and highly effective at 90% effective. Efficacy of surgery in controlling seizures.

Speaker: Mr. Vivek
Thank you, Dr. Nilesh. Thank you for your time. It was a pleasure talking to you. And thank you to all the listeners those who are listening to our Dr. Talks. Have a great day ahead. Bye bye. Thank you.

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