From epilepsy patient to epilepsy surgeon: Dr. Ashok Pillai

Dr. Ashok Pillai is a professor of neurosurgery and neuroscience associated with Amrita Institute of Medical Sciences, Kochi, India. He underwent epilepsy surgery after a diagnosis of epilepsy in his mid-30s. 

Dr. Pillai received his undergraduate degree and medical training in the United States before returning to Kochi in 1999. He experienced ecstatic seizures for nearly a decade before he was diagnosed. His personal experience with epilepsy and epilepsy surgery led him to train as an epilepsy surgeon, whereas previously he had focused on surgical neuro-oncology. The Amrita Advanced Centre for Epilepsy, which he heads, has performed more than 1,000 surgical procedures.

Dr. Parthvi Ravat spoke with Dr. Pillai about his experience with epilepsy, how it shaped his career path, and how it informs his clinical decision making.

Transcript

[00:00:00] Dr. Parthvi Ravat: Welcome to the podcast. I'm Dr. Parthvi Ravat. For our listeners, I'd like to introduce Professor Pillai as a neurosurgeon born, brought up, and trained in the U.S., and now he's moved back to the Indian subcontinent where he practices at a tertiary care center in the southern part of India. But the most interesting part is that he also has been a patient of temporal lobe epilepsy and undergone epilepsy surgery for it. Let's hear from him firsthand today.

Professor, welcome, and please tell us, how has your life journey been? We'd like to talk about your epilepsy. 

[00:00:32] Dr. Ashok Pillai: Honestly, I didn't know I had epilepsy. I had only auras and you would classify them as experiential auras or some people definitely classify them as ecstatic seizures.

But as I go through the explanation, the description of the experience, you might understand why I say it's hard to classify. The classification actually doesn't mean that much. Even the idea of loss of awareness doesn't really make sense. Because it was what I classify as a super awareness. 

So I didn't have further generalization. But it was definitely epilepsy. Technically speaking, you would call these maybe dialeptic seizures that came from a structural lesion in the dominant temporal lobe neocortex. 

I didn't know that these were epileptic. I came to know it was epilepsy when it was about, I must have been about, 37 or 38 years old. I think I probably had it for at least, well, I know I had it for at least 10 years before that I would experience a very heightened feeling of deja vu. And we always talk about that in temporal epilepsy.

Each person who's listening to this, perhaps sit down and just remember when you had the deja vu or when you have it next, just analyze that moment. It is an experience. We suddenly feel that, “Okay. I have been sitting here or doing this at the same time in the same place.”

It hits you kind of profoundly what's happening. This moment in time and space has already happened before. Right. That's the common experience of deja vu. 

Our brain is all constantly receiving inputs on space and time. The temporal lobes are very important in that, internalizing it and then committing it to memory and whatnot. And for whatever reason, and obviously in an epileptic seizure, that cortex is activated, right? And so it's like a visual hallucination or some kind of visual aura that we think that those cells are activated and then you see something which is not there. We immediately feel that we were there in this moment in time and place. 

So getting back to my experience. That was the beginning, I guess. But it was a little bit more profound. It would last longer. And over time, it evolved into an experience that…okay, when I'm sitting here talking to you, I know whose room I'm sitting in. There's a chair underneath me. I can tell you what's there behind me simply because I've registered the space. Even if it was a new space, even if it was a new place. I just walked into a room and I can tell you whatever I've registered. 

Similarly, with time, I mean, it happens to be around, I'm not looking at my watch but I can tell it's probably around 10:20 am today. Simply because I'm registered in time also. Right? So, that's just how incredible our brain works in time and space registration. 

Now, imagine that that background awareness of time and space all at once comes immediately to the forefront. Okay, so now I am just aware of all spaces. I'm immediately incredibly aware of the space around me without any distinctions. Walls are gone. I'm really, fully aware of the space above me, in front of me, the next room beyond that, behind me in other rooms.

To the extent when you say you're really aware of it, you are actually there. So the feeling is that I'm there everywhere. Now imagine simultaneously that same thing happens in time. And so time really disappears when you're there in the past, present, and future in experience. Time kind of disappears and both of these happen simultaneously. 

At the time it was a profound experience. And I can really clearly remember incredible peace, because, you know, what is peace as well as the absence of worries. It's the absence of fear. It's the absence of concerns. It was an incredible sense of peace and contentment. I remember specifically this contentment, like, whatever I had attached to anxieties about the future or worries about the past, those are also gone because you're just still there.

This was the experience I had. I guess if somebody were to have followed me, knowing this, we could probably say that the duration of these things increased and the frequency, they would come in clusters. So if I had one today, I know I'm going to get a few more today and tomorrow, and probably the cluster will last 2 or 3 days. And then it would be gone for like 2 or 3 weeks. And then it would happen again. And when it happens again, you know what's happening because it's that same experience. 

Now, at the time, you have to remember, I didn't recognize these as seizures. I just recognize it as some incredible experience, the cause of which I didn't know. 

[00:05:13] Dr. Parthvi Ravat: So how did you find out about it?

[00:05:16] Dr. Ashok Pillai: I just let it happen and I just let it pass and then and remind you, at that time I'm basically still a neurosurgeon just finishing up my training. And so I had no clue that this is a seizure.

I remember a couple of times when I was, you know, giving a talk and then at the end of the question session that happens and I don't think anybody really realized it.

And then it happened in front of one of my colleagues and our chairman of neurology, and I was in his room just talking and he immediately saw it and he said, “Something has happened. You had some kind of a partial seizure,” and I knew what I had. So, then I put two and two together and we understood it. 

That immediately led to basically an EEG and MRI and then we found the substrate. On EEG I didn't have events, ictal events. I just had interictal spikes from the left anterior temporal region. And then the MRI showed a cavernoma in the dominant temporal pole.

This is, you know, epilepsy. So then it's diagnosed. 

[00:06:14] Dr. Parthvi Ravat: Were there any cognitive symptoms or things which would have interfered with your high-profile job as a neurosurgeon? And how did you deal with it if they were there? 

[00:06:24] Dr. Ashok Pillai: I was aware that I was having memory loss before I even knew this was epilepsy. The interesting thing about when you're having memory loss, especially if you're somebody in the medical field, you may not panic, but you kind of wonder what's really happening.

Are you having memory loss? Or is it just normal forgetfulness? It's a common concern or doubt. And I remember being to the point that I couldn't remember names of things. And I used to go and tell one of my colleagues. I told her, you know, “I seem to be having a lot of memory problems” and we just discussed it kind of informally to the point that [she said], “It’s probably just, why don't you take some vitamin B?”

If you don't fit the actual phenotype of somebody who should have memory loss, then we just deal with it as a minor thing. But that tells me that it was, it was happening then. And it was only later when I discovered that I had epilepsy that we made the correlation and then okay, so this is a memory loss. What I was having, it wasn't really so much a memory loss as much as dysnomia, so having difficulty remembering the names of objects or people or places. It was amazing how it affects your life actually, because you cannot just go up to people and ask them, “What's your name?” You know, people who are related to you!

And again, I never, nothing really spread enough to the point that I really lost awareness. And so I was actually still operating at that time, but after I discovered it was [epilepsy] I kind of took 6 months off and would just sit in clinic and not operate because I was a little bit concerned about that myself, not knowing which direction it’s going and also to sort out treatment. 

I was started on anti-seizure medications at that time. So, the anti-seizure medications had a profound effect on me, because whichever medication I started would really throw my mood off. And I had times when I had rage and difficulty controlling rage and it was related to being on medication.

So, as I go up on the dose, I could kind of see this happening, not to mention sleep problems. Many people envied me for my ability to sleep at any time, any place. Once I was on anti-seizure medications, I would just fall asleep and get up in an hour and not sleep for another 20, 24 hours sometimes. And I remember my roommate saying, “This is something we have to put in the newspaper, because you're the last person we would ever expect to have insomnia.”

I don't have evidence to say this, but I wonder whether some of these interictal discharges were then just rerouted through a different route through the limbic system, as opposed to finishing off their expression there in my temporal neocortex. I don't know. This is very speculative.

And I myself tried to take care of my mood symptoms by coming down on the medications or even stopping it. And then I would have auras, which obviously I enjoyed, and I was free from the mood problems. But then I know what the long-term results of that would be scientifically, or clinically, I know what that would lead to.

So I was in a dilemma, like a catch-22 situation where I don't want to be on medications, but I know I have to be. So I went through about a year or so like that. And that was also partly waiting to get to plan surgery because I actually had board exams around that time and I didn't want to just have my surgery done and then have to postpone all that. I didn't know what the outcome of that would be. So I went through a challenging time relating to cognitive and mood issues. 

After surgery, the events stopped completely, I've never had it [again]. And then I tapered myself off drugs and never had events after that.

But I think some of the mood and cognitive issues did continue for probably a few years after that. It's very hard to say exactly how long it lasted. 

[00:10:13] Dr. Parthvi Ravat: Yeah, but glad you spoke about the side effects of anti-seizure medications (ASMs).

[00:10:17] Dr. Ashok Pillai: Yes, if I were to talk about my experience with epilepsy, one thing I can tell any clinician as a patient is that what we think about as side effects, it's a lot more than just you're having a side effect to the medication. “Let's try it. Let's see how you do. If you can tolerate it.” No, if it comes to cognitive and mood side effects, they’re actually very far reaching. They really affect your day-to-day life. And they can tend to snowball. 

When I see my own patients, I’m probably one of the individuals who would be much more ready to taper and stop medications in any post-op patient. You shouldn't be doing it too fast and then you have to do it very judiciously. We have the same discussions with all of our patients about how it's going to affect their life if they happen to have one seizure after they're seizure free after epilepsy surgery. 

Even following all those concepts and practices and guidelines or recommendations, I still have my own personal experience, which kind of sometimes motivates me for at least offering drug freedom. 

[00:11:24] Dr. Parthvi Ravat: Yeah, yes. And it's a learning point for young neurologists like me to always be mindful of side effects of ASMs and discuss it with the patient.

[00:11:33] Dr. Ashok Pillai: I have been involved in long discussions with various groups, even in other countries, most recently in North America, about temporal lobe epilepsy. And I've noticed a lot of epileptologists or surgeons who are not aware of this, they don't really look at drug freedom in temporal epilepsy. I've even been questioned, “But why do you try for drug freedom on your patients?” 

Because from my own personal experience, but obviously my personal experience opened up my eyes to the fact that you're only seeing the tip of the iceberg in that individual's life. So drug freedom does have a very significant role when it's possible. It is still of significant importance to the individual who's suffering from epilepsy, 

[00:12:17] Dr. Parthvi Ravat: You mentioned you've treated and followed post-op so many epilepsy patients, with an experience of more than 950 epilepsy surgeries. What made you venture into this epilepsy subspecialty? You were a glioma surgeon previously, and then you changed and became an epilepsy specialist.

[00:12:36] Dr. Ashok Pillai: I wouldn't have become an epilepsy surgeon had I not had epilepsy myself.

I just wasn't aware of it. I never had it in my training as a resident. I really loathed studying things about electrophysiology, EEG, or even epilepsy for my board exams. But it was right about that time that I had this experience also. So that's really what opened my mind to it. And I was already actively involved in neuro oncology, glioma surgery, brain mapping, awake surgery.

These are things I was doing routinely before I even turned towards epilepsy. And then it kind of seemed interesting. But what really opened my eyes was when I started exploring the possibility of studying and getting trained in epilepsy surgery and then dedicating my efforts to that.

As part of that, I went and visited different centers and I had the good fortune of meeting Dr. Pete Engel about 14 years ago. I visited his center and UCLA and I'll never forget a day when I was sitting with him in his clinic. And he, he kind of asked me about my experience and I told him a little bit about it, but then he had me sit down and just do the math. The incidence of epilepsy, then the instance of surgically remediable epilepsy multiplied by any population, obviously, at that time, the population of India, which I think then was probably only about 1. 2 billion. Maybe 1.15 or so. And then I realized the huge number of people who have drug-refractory epilepsy and who would potentially benefit from epilepsy surgery. And obviously, this is after my own experience of what that all means to the individual who's suffering from it. 

And then I just simultaneously, I looked around and saw virtually nobody. I remember him telling me, “Look, it's just a drop in the ocean. You could be doing this for the rest of your life and it'll be a drop in the ocean.” And it's true still today. I think what he said is very true, and that really got me kind of decided on it. And then I never really thought twice about it. So I went and got trained and came back, set up a center with my colleagues here, who were already into it. So we were kind of well set up to start the center.

I remember after getting into epilepsy surgery, you know, doing a few cases, having the center running and then things were kind of picking up and going well, and I thought, “Well, this is great. You know, if nothing else it's not like doing so much tumor surgery, at least my patients will remain alive.”

I remember a time when I thought like that, but the thought that, people with epilepsy don't die is of course wrong. We all know they can die and at a significant rate, mind you, but if they don't die, they have to live with epilepsy.

I mean we do really well. If you look at individual epilepsy subtypes or syndromes or types of surgery we do, we actually do pretty well. So our outcomes range between, I always quote between 60 to 90%, depending on the subtype.

I mean, but it's not good enough yet for me, because that means 10% to 40% still have to deal with this. There's still a long way to go because we get the most difficult cases here. So we're one of the most active centers in the subcontinent. And so by nature of that, we get the most difficult, most challenging cases.

And we still, I still struggle and fail also, and we know it, and we constantly try to work on improving that.

[00:16:03] Dr. Parthvi Ravat: Could you discuss any breakthroughs or advancements in neurosurgery that have positively impacted epilepsy treatment? Particularly from your own perspective, both as a neurosurgeon and as a patient.

[00:16:14] Dr. Ashok Pillai: I think there are a lot of advancements. So stereo EEG, neuromodulation, DBS, resections, stereotactic focal thermal ablations. I do all of these in pretty significant numbers. Everything I just listed, those are all very significant advancements. And I utilize them. They have helped, they give better results.

There is a tendency to develop technology, which is obviously good, but there's a tendency to consider more sophisticated technology as being better than the old. So I do some of the most advanced minimally invasive stereotactic thermal ablations. Many people are aware of that. I do that, but I still do it only where I feel it gives an advantage over the traditional way. So I don't really depart with traditions.

For example I was recently in a place with a mentor who was very wise and from whom I learned a lot, where laser is done in a very active way for temporal lobe epilepsy. And that's one way of doing it. I personally would not do that, simply because of my experience with 300-plus patients with temporal lobe epilepsy and seeing the outcomes, both from a functional standpoint but also not just being seizure free, but seeing how they move through life and get employed and get have a family or get a driver's license and all these things after traditional surgery. 

And then analyzing a lot of these numbers, I am very, very concerned about sophisticated technology replacing human reasoning and skill. I'm not at all against it. I, in fact, myself utilize it and am actively involved in R&D for these things with companies. I think it definitely has a role and we have to utilize it, but it has to be equally balanced with traditional skill. 

So I feel for example, you asked a question about the U. S. and India, which is where I've had my experience. Obviously, we don't want to restrict ourselves to these two countries, but using that as a template for what people like to call East-West, which, I don't like that nomenclature either East or West. It's again, going back to some old kind of colonial thinking, but just different cultures and different ways of doing things. Everybody should be open to learn from any other country as long as it's giving results. 

I’ve noticed that in Indian neurosurgery, for example, we make up with skill where we lack in technology. And I've actually seen practicing as a trainee in the United States that people actually make up with technology where they lack in skill. And that's not making any accusations, just making my observations.

So I think the best thing is where you have a balance. For the benefit of the future generations, you really need to still maintain good microsurgical skills, because there are many things, for example, temporal epilepsy, where I feel microsurgical techniques still will give you better long-term results.

[00:19:08] Dr. Parthvi Ravat: We'd like to hear about any memorable patient stories or experiences that have shaped your experiences and understanding epilepsy, if any.

[00:19:18] Dr. Ashok Pillai: So there are many. It's only from time to time you reflect and remember these, but recently we had our International Epilepsy Awareness Day and celebration of 1,000 cases. And one particular patient who I reflected upon a lot and remember…I'll never forget because without going into great detail or and trying to be anonymous, I had a patient who came from a very pious, humble family, very sincere family. They never really questioned us. They had full faith in the treatment and they were really struggling with the difficulties of epilepsy in life, in all aspects of life. 

So this particular individual, she was very talented. She was a very talented Hindustani singer. And I myself, as an amateur musician, immediately appreciated that and really respected her talent and respected how the family was trying to live with, cope with epilepsy, including things like getting married.

She had a very difficult epilepsy. She had once or twice a month severe seizures, which would end up in generalized tonic-clonic seizure events with shoulder dislocations. Quite dangerous. We tried our best back in those days, about 7, 8 years ago, to find a focus. We couldn't find a focus even with the best of our imaging other tools and even a stereo EEG. In the absence of that, with severe disabling seizures, I went for DBS, and the first round failed to give adequate control. I did another round with the second round of targeting. Somewhere in the process, we still couldn't adequately control her.

And I have my own thoughts about what perhaps could have been done different, but that's something that only evolves over time. Maybe even the understanding of DBS now is different in DBS and epilepsy is different from 5 years ago. The understanding of being able to find small foci in MRI-negative epilepsy from imaging post processing or improved imaging techniques is different now from 6, 7 years ago.

I wish we could go back in time and repeat that. Because ultimately what happened was just about a year ago, I received a call from her referring neurologist and shortly thereafter from her mother saying that she was found, you know, dead in her bed, having suffocated from seizures during her sleep.

She died from SUDEP. And her mother sent me a song that she, one of her last songs that she had recorded. So that haunts me, you know, and I have discussed with the family after that also, and they're still very active and they still feel like they would like to improve awareness. 

I always remember this even now when I'm trying to plan the next direction of our center, what to do. We have patients where we cannot find the focus or where we just cannot get control. And it's very devastating. These kinds of individual stories will not be addressed until you do something better.

There's a quote from Wayne Gretzky, who's a famous hockey player, ice hockey player. He said, “You have to go where the puck is headed, not where the puck is, because it's moving. It’s in motion.”

[00:22:10] Dr. Parthvi Ravat: As an ending note, any words of inspiration for people with epilepsy who want to pursue a career in epilepsy or medicine, or any words of inspiration for young researchers and clinicians in epilepsy?

[00:22:22] Dr. Ashok Pillai: Whatever has inspired you or got you interested in this, definitely always reflect on that and remember that and see it in others also. And then just keep moving. 

You have to think out of the box for new solutions. You have to see what has been done in the past. You have to appreciate what has been done in the past. And many times you have to stick to it also, because you don't want to depart from the successes of the past at the same time. You want to address the shortcomings with innovation. So, as a researcher, you want to innovate, you want to think out of the box and come up with something new, be it a medication, be it a technology that's going to help us diagnose or localize something. 

Whatever you do, if you can make an impact, you will really feel good about it. It will really change your life if you can see people who have impacted from your work. One of our research fellows who was working with us developed on his own a post-processing tool using PET to help us find foci. And I really have to give him credit because I use it so much now. 

So that's my advice to any young researchers and similarly clinicians. You have to think like a researcher just as well, but you have to put your thoughts into actions with the patient immediately in front of you.

[00:23:40] Dr. Parthvi Ravat: Yes. That's wonderful, Professor. Thank you so much. We had a very interesting conversation and I'm sure our listeners would be very happy to hear these wonderful insights.

Thank you so much for being here. 

[00:23:52] Dr. Ashok Pillai: Thank you.