XXXX - Prof. Poodipedi Sarat Chandra, All India Institute of Medical Sciences
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Episode Highlights
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About Sarat Chandra
Sarat is a neurosurgeon…
Full profile: Sarat-Chandra
Topics mentioned
neurosurgery
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Trailer & intro
00:00 Manjari Tripathi
So, before I even call the person as being refractory, I have to make sure of certain things. One is, you know, that they are actually adherent to the medication. And you know, nobody likes to take daily medicines… and the question I ask them is “Who is supervising your medicines?”
Intro
00:20 Torie Robinson
About 30% of people with an epilepsy keep having seizures despite trying all of the antiseizure medications that usually work for their type. And I do personally know what that is like! So how do neurologists and the person with the epilepsy - and often the carer too - how do they decide what to do next? Well, today, neurologist Dr. Manjari Tripathi is going to explain it all to us; how treatments and seizure preventions can go beyond medication (for instance; like lifestyle changes), and then the epilepsy surgery pathway. So, figuring out who’s suitable, the preparation process, and also, how we need to look at the person as a whole - as a fellow human who is as worthy as you or I, and not just some random, some statistic, who happens to have an epilepsy.
Meet Manjari Tripathi
01:03 Torie Robinson
Thank you so much for joining us today, Manjari. Could you tell us a bit about yourself and what do you do? And where are you from?
01:09 Manjari Tripathi
So I'm from Delhi, India, from the All India Institute of Medical Sciences. I'm the head of department there and the clinical lead for the Centre of Excellence for Epilepsy Care at our centre.
01:24 Torie Robinson
Well, going straight into things; when people think about epilepsy (and I totally get this because I used to think this), people just generally think about medication, medication, medication. But tell us about how effectively caring for people can involve more than just giving them drugs.
Epilepsy Is More Than Seizure Control: Daily Life, Stigma, and Mental Health
01:39 Manjari Tripathi
Epilepsy is more than just seizures. And 70% of people with epilepsy are controlled with 1 or 2 medications, but then they have their whole life! They have the spectrum of their aspirations, whether it's education, whether it's a job, whether it's marriage, whether it's driving, whether it's holidaying. So, they have the same aspirations as any one of us, you know. So… and also along with that is the impact these people have with the misunderstanding that the community has about this disease in terms of getting stigmatised, being made to feel different, and then having anxiety and having depression, and in few cases psychosis associated with it. Then the unexpected nature of the disease, which makes them amenable to falls, injuries, burns and sometimes sadly even losing life. So, it's… epilepsy is just not just seizures, it's much more, and particularly when the seizures are not getting controlled with 1 or 2 drugs, what we call as drug-resistant epilepsy. So, we have a treatment gap for epilepsy, but we have an even bigger treatment gap for drug-resistant epilepsy.
03:06 Torie Robinson
Yeah, indeed. And it's a crazy percentage, right (the 30%). It's nuts when you think about… [how] that hasn't changed much over the past few decades!
03:14 Manjari Tripathi
No, unfortunately no, yeah.
03:17 Torie Robinson
Well not yet, hopefully, fingers crossed, things will get better. So, when you are thinking then, about treatment, what are the processes that you need to go through - well, you and the person - because it's a 2 way… it's like a team, isn't it, when you're thinking about certain treatments, what processes do you have to go through? So, like EEGs, MRIs, what do you have to consider?
Diagnosing Epilepsy: Clinical History, EEG, Imaging, and Finding the Cause
03:38 Manjari Tripathi
Yeah, so, almost every person the diagnosis is based on the clinical history and we try to differentiate right from the beginning “Is the seizure focal (that is coming from a local area of the brain), or is it generalised (coming from the whole brain)?”. That's the first thing we have to do. Or is it something we can't make out? And then we try to get an eyewitness account, some home videos or situational videos from the CCTV. And the EEG corroborates the diagnosis, it doesn't, I mean, a negative EEG does not rule out the diagnosis, absolutely. And we have to do a neuroimaging; in our part of the world, it's a CT. And if the seizures are not controlled, epilepsy protocol MRI is what is done. So, essentially, this is what the investigations are for, you know, people with epilepsy. Now, 70% of people with epilepsy, as I told you, will get control with 1 or 2 drugs, and in many of them we will be able to find out the cause. But 25% of them, the cause remains unknown. And, you know, we try to, you know, find out whether it's a structural cause, it's a genetic cause, it's, you know, an immune-mediated you know epilepsy, or it's, you know some kind of lesion which is going to produce resistant epilepsy, like, you know, cortical dysplasia, etc. etc. So, we try to find out the cause, yeah.
05:15 Torie Robinson
And so, once you know the cause, especially the cause of the refractory epilepsies, what sort of time do you bring up surgery or other sort of treatments other than drugs? And also, lifestyle changes, because that can be something as well.
Before Calling Epilepsy Drug-Resistant: Medication Adherence, Lifestyle, and Assessment
05:27 Manjari Tripathi
Absolutely. So, before I even call the person as being “refractory”, I have to make sure of certain things. One is, you know, that they are actually adherent to the medication. And you know, nobody likes to take daily medicines… and the question I ask them is “Who is supervising your medicines?”. And if the person, you know, in India, is taking the medicine on their own, then very often they are likely to forget it. So, we always make sure somebody is supervising the medicine or it's, you know, alarmed into their mobile phone. So, one is they're adherent. Second is we have to rule out functional dissociative seizures, which are due to emotional reasons or psychological reasons before we say it is refractory. Third, is we have to make sure they follow certain lifestyle rituals like timely sleep for 7-8 hours, and of course, not taking too much of stress, not taking medication which can provoke seizures. We know common painkillers like Tramadol, you know, we know certain antibiotics can trigger seizures. So, we go into this history - and the doses of the medicines also have to be appropriate. And the medicines also have to be appropriate. For example, a person who has generalised epilepsy: if the seizures are coming from the whole brain and we use drugs meant for focal seizures, the seizures will continue, particularly if it is a genetic generalised epilepsy. So, you really have to see that the medication is appropriate to the seizure type and the seizure syndrome. Now, once we've established that all these factors have been ruled out and the person is truly refractory, we get them in for advanced investigations, which is epilepsy protocol: MRI, which is a 1-millimetre section MRI. It takes about 45 minutes to do. And then we do a video EEG where we admit the patient and we record seizures (typically 3 or more seizures) which are the habitual seizures, to localise from where the seizures are coming from. If we can match the imaging with the video EEG, the patient need not go undergo any further investigations and can undergo surgery based on concordance, or, you know, the matching of the video EEG findings with the MRI. However, if there's a discordance between the video EEG and the MRI, we do further investigations like ictal SPECT, PET, MEG, and sometimes invasive monitoring also, to determine from where the seizures are coming and, you know, tackle that area by either removing it, which is resection, or by disconnecting it. So, these are the modalities for refractory epilepsy.
Why Early Referral Matters and How Patients Reach Epilepsy Surgery
08:20 Torie Robinson
And how long, on average, do you wait (assuming a person is managing to take all their medications, adjusting their lifestyle); how long do you give a person to taking the medication to find out, okay, we need to look at surgery?
08:35 Manjari Tripathi
Unfortunately, my centre is the largest tertiary referral centre in the whole of North India, and we get patients as late as 20 years, 22 years, 25 years into refractoriness because… there are several reasons for this. One is that there is a lack of awareness and lack of knowledge. You know, that is what your channel is going to do for us. It's going to generate awareness that “Hey, if your seizures are not controlled with 2 drugs and you've been taking them regularly in good doses, please go to a centre which evaluates for drug resistance early by the second or the third year. Don't wait for 20 years! Because in these 20 years the patient has lost out on education, on job opportunities, on you know cognition, the memory goes down, it affects the behaviour, it affects the mood, and all domains of existence get affected, you know. So, the earlier they report to us the better.
09:37 Torie Robinson
I love what you just said “All domains of existence.”. You could not have put that more succinctly. That is it. The epilepsy affects your life.
09:46 Manjari Tripathi
So, for minimising this, what we've done is we've made, you know, booklets and handouts for general physicians in our community, which has simple… which is a simple tool which helps them check: so if the seizures are not responding to 2 medicines, if there is something on the MRI, refer. It's as simple as that. And so, that's how we get our patients a bit earlier. And, you know, even when they come, come to us early, there is a process, because we admit them, then we do the tests, then we have our patient management meetings, and then we go in for surgery. So, this whole process itself, even after coming to us, may take about 6 months to a year to reach to surgery depending on how complex the network it.
10:35 Torie Robinson
Yeah, exactly the same over here in the UK. It takes a while, doesn't it? And you need that multidisciplinary team. Yes, the neurologist, but the psychiatrist, the neurophysiologist, the whole shebang, so yeah, if anyone likes being the centre of attention for a while in a cool way, get yourself referred for looking into surgery. And actually, speaking of that, what percentage of people on average are suitable for surgery once you've started looking into it? Because not everybody is.
Who Can Have Surgery? Ketogenic Therapy, Yoga, and Other Options When Surgery Isn’t Suitable
11:01 Manjari Tripathi
So, you know, when we are a centre, surgery is not the only option. And if 30% are refractory, we do all these investigations; about 60% to 70% of them will be candidates for surgery. But a good 30% of this 30% will not be candidates for suitable for surgery. You know, there are different types of surgeries, so 30% will not be suitable for any surgery. And that's where we are very on the board with diet therapies, and we found a lot of success, not just in children! We worked with adults and adolescents, and these diets are very good. they're as good as adding a new antiseizure medicine with without the side effects of the antiseizure medicine.
11:53 Torie Robinson
And are you talking about ketogenic diet here?
11:55 Manjari Tripathi
Yeah, absolutely. So, we have worked with modified Atkins diet, ketogenic diet, and low glycaemic index diets. Because you know, in the children, ketogenic diet can be given because they haven't got conditioned to adult, you know, to food, the normal food which everybody has. But in adults it's very difficult to implement the ketogenic diet in its purest form. And what we do is we modify it with the modified Atkins diet, which is more acceptable. The low glycaemic index diet, which is more acceptable than the ketogenic diet, and we found it to be as useful as the ketogenic diet, and we've published our studies in very good journals. So, really, that's an option we give. And the other option we give our patients is to reduce the autonomic component of the seizures, and we offer all of them a yoga module, which is again published, it's our research work. The yoga module helps reduce the sympathetic tone, improve the parasympathetic tone and has been known to reduce the frequency of seizures and improve the self-esteem of the patient. So, it's not just surgery, there are various other options available to us which we offer our patients, which are those 30% which cannot go in for a definitive resective surgery, or a disconnective surgery, or a neuromodulative surgery.
13:17 Torie Robinson
I love you bring up yoga. So, when I was in India a few years ago, people were “Yoga, yoga, yoga!”, and I was thinking, as an ignorant person was thinking “What are you talking about yoga for?!” And now you like, I say generally, in India, are like a world leader in the potential impact of yoga for improving quality of life and potential seizure reduction, and improvement in mood as well.
13:41 Manjari Tripathi
So, it's not just surgery, it's multiple things which can be offered. Sometimes, you know, a lot depends on the family support. A lot depends on, you know, how much financial constraints they have. Of course, in our centre we do have you know various government schemes which, you know, even care for surgery, so there's free surgery, there's free medication. But, however we still can't reduce the impact of the duration lost, that is 22 years to reach us. Yeah, absolutely.
14:19 Torie Robinson
Yeah, well, I guess that's why we're doing this, isn't it, to get people to come forward and ask for insight into or research into the surgery for them. And so, you did, you've done, papers on quality of life - it’s not just about seizure control. And you're involved in an international ILAE project on that. Could you just give us a little bit of insight? Where are you with that now? Have you discovered anything so far?
Improving Quality of Life: Exercise, Mental Health, Emotional Support, Family Communication, and Community Inclusion
14:40 Manjari Tripathi
Well, so what we found is that if people with epilepsy engage in physical activity (that is they have a scheduled exercise program or physical activity program), in fact, in our, you know, patient series we've had people who've run marathons with epilepsy, people who've you know run gone cycling all over in you know different places and participated in Paralympics too. You know, so sports and physical activity is very important to improve the quality of life. A person with epilepsy feels very confined to the home and to mitigate that, we offer them these programs. We also advise them yoga. We also advise them group therapy sessions. As I told you, we have a patient support group where once a year we go on a picnic with our patients so they feel very involved with the program. Apart from this, we work on offering them the assessment of their mood. They're very simple scales which we have standardised for the Indian population. So, looking at the possibility of depression and anxiety (which is seen in 60 to 80% of people), you know. And very often we don't even ask them “How you feel, have you ever felt that life is not worth living” or, you know, “You don't care about what's happening around you, nobody cares about you.”, so these kind of negative emotions are picked up with the brief scales we have. And then, early interventions - along with our neuropsychiatric colleagues, along with our psychology colleagues - goes a long way in improving their quality of life. The other thing which we found, which we've published too, is expressed emotions. You know, if I'm a person with epilepsy “How do people around me express their emotions, conveying the unpredictability of the disease or the conveying the, you know, the burden of the disease which is felt by the caregivers or the family? Is it a positive expressed emotion? Is it a negative expressed emotion?”. So, we found that families where there was a positive expressed emotion; the patients did better and, you know, they had better quality of life. Whereas there were families where unfortunately, due to lack of awareness, there was a negative expressed emotion. And so, this gives us a window of intervention where we could work on these families and tell them “Hey, this is how you communicate.”. So, communication and epilepsy: communication by the doctor to the patient, by the caregivers to the patient, and by the community, by the school, you know, the principal, the schoolteachers, the children in the school or the workplace people is very, very important. Supporting a person with epilepsy, particularly when the seizure happens. You know, very often in school what happens is that other children start giggling or making fun of the person who's fallen down because they wet their clothes. So, communication is also a key in improving quality of life. Yeah.
18:12 Torie Robinson
Thank you so much, Manjari. Brilliant.
18:15 Manjari Tripathi
It was amazing, yeah, it was amazing and I hope it does help us reduce the number of years before which the patient comes to us for intervention.
Closing thoughts & thanks
18:25 Torie Robinson
Thank you to Manjari for showing such care and empathy for everybody affected by the epilepsies - and seeing beyond seizures as well, you know, in order to improve people’s quality of life. In our next episode we follow on with Manjari’s colleague, neurosurgeon Dr. Sarat Chandra who’s going to go into how epilepsy surgery works, the preparation, the types, and why it shouldn’t be seen as scary as it is by many! Do subscribe to support our channel - if you haven’t already - and see you next time.