In this episode, we talk with our guest Dr. Nilesh Kurwale who is an epilepsy specialist based out of Pune, India.

Dr. Nilesh explains Epilepsy Surgery as a treatment approach in infants. He helps us understand the following:

  • How early surgery can be planned for infants? How long should one wait for medicines to work? Are there any risks in waiting?
  • The rationale behind epilepsy surgery in Infants.
  • The typical diagnosis or syndromes one finds in infants that can be treated surgically.
  • Safety of surgery while operating Infants.
  • The outcome of epilepsy surgeries in Infants.

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Epilepsy: Rationale, Benefits and Safety of Epilepsy Surgery in Infants

A talk with Dr. Nilesh Kurwale.

Speaker: Mr. Vivek

Hello, welcome to Dr. Talks. This is your host Vivek. Here we chat with the best doctors about diseases and conditions they treat. Our guest today is Dr. Nilesh Kurwale. Dr. Nilesh Kurwale is a Neurosurgeon specialized in surgical treatments of epilepsy. He is head of Bajaj Allianz Center for Epilepsy at Deenanath Mangeshkar Hospital, Pune and consults at Aditya Birla Memorial Hospital as epilepsy surgery consultant. He also serves as an associate professor, neurosurgery and chief of functional neurosurgery division at DY Patil university neurosurgery training program. He runs a Bajaj Neurosciences Laboratory dedicated for translational research related to epilepsy. Dr. Nilesh is an expert in the evaluation and treatment of epilepsies not responding to medicines. Due to his extensive experience and focus on epilepsy cure, Dr. Nilesh is recognized as one of the top Epilepsy surgeons in India and treats both Indian and International patients.

Speaker: Dr. Nilesh

Hello Vivek, Thank you for inviting me.

Speaker: Mr. Vivek

In our last podcast doctor, we discussed the benefits of epilepsy surgeries and different types of epilepsy surgeries. We also considered factors such as cost, recovery period and rationale for the epilepsy surgeries. We briefly touched upon the topic of epilepsy surgery in infants. Today, I would like to discuss more in detail about epilepsy surgery in infants.

Speaker: Dr. Nilesh

Yes, it is a very important topic. And I generally hear a lot of questions, queries and anxieties of the parents about this topic or on this subject.

Speaker: Mr. Vivek

Just to set up some context for our audience, let me start by asking what is drug resistant epilepsy.

Speaker: Dr. Nilesh

So, as we have already highlighted in previous talks, whenever two drugs given in appropriate doses and taken by patients without fail, if they fail to control the seizures and you continue to have seizures again on those two drugs or three drugs, then this is labeled as drug resistance. Meaning drugs are not effective in controlling the seizures completely. And that’s where we label them as drug resistant epilepsy candidates.

Speaker: Mr. Vivek

Once epilepsy is labeled as drug resistant by a doctor, what are the treatment options the patient has?

Speaker: Dr. Nilesh

So when the drug resistance is established, or labeled, then we typically say that adding further drugs is not going to help and probably that the magnitude would be just 2% to 5% cases will be helped by further drugs. So 95% times, addition of any drugs in the market available may not be able to control your seizures. So, then comes the complete armamentarium of non pharmacological treatment options. So, what are these non pharmacologic options, one major part is surgery, other major part is diet and the third part is neuro modulation. I think all these three parts have already been covered. So, here 80% would be taken care of by mostly surgical options meaning that we have some abnormal structure narrowed down in the patient brain that is a possible cause of epilepsy and we take it out.

Speaker: Mr. Vivek

And now let’s look at a specific treatment for infant eplipesy. How is an epilepsy treatment planned for infants right from a drug based to surgical options?

Speaker: Dr. Nilesh

Now, infants present very specific problems to us. In a way, there are few peculiarities of the infantile brain that need to be addressed or I would say uniqueness of the infantile brain. The uniqueness of the infantile brain is that it is a developing brain. I mean the maximum development of the brain volume wise happens within the first two years. Almost 90% of the brain development is completed within two years. So, whenever the epilepsies start in this year, they have a maximum potential to affect the brain development to affect the cognition. So the infantile brain is a developmental brain and here the epilepsies will affect them most severely. And that is the reason we need to be very aggressive or very vigilant in picking up those epilepsies very early, diagnosing them very early, accurately and addressing them effectively. So as to preserve this developing brain and to preserve this developing time I normally call it training time of the brain or developing time of the brain. So for infantile epilepsies, we need to be on our front foot in diagnosis, in offering the treatment and in delivering that treatment, so that is the peculiarity of infantile epilepsies or infantile surgeries. So the surgical part we will come later on. But one more thing is that in normal drug resistant epilepsy scenarios, we will wait for two years to establish the drug resistant to label a particular kid as a drug resistant. Here in infants, we cannot wait for two years. If the patient fails the first drug, we immediately add the second drug. The threshold for adding the new drug in infants is very less because the time window for us to treat this epilepsy is very less. We really do not wait for a long time to label infants as drug resistant epilepsy. If the drug fails within three months to five months we label them as a drug resistant epilepsy. At the same time there is a different challenge in the infantile brain to diagnose those epilepsies with accuracy. So we will revisit in later sections how to diagnose or what are the peculiarities of or what are the intricacies of diagnosing epilepsy.

Speaker: Mr. Vivek

And how early surgery can be planned for infants? How long should one wait to see whether the drugs work? And what are the associated risks in waiting too long?

Speaker: Dr. Nilesh

Basically, I would say in infantile epilepsy, the good part is that many are well defined syndromes. So whenever infantile epilepsy is diagnosed the qualified pediatric epileptologist or a neurologist can label most of the time these syndromes in some category, and we more or less know the prognosis, how they’re going to go. But if a surgical plan or if we find that surgery may help such kids, we should not wait too long or if a surgical candidacy is found out, then we should not wait too long to undertake that surgical decision because we are losing brain development time. So if you wait for too long, after some time, you may be able to cure only epilepsy and the part you lose in development, you may not be able to get that back completely, I would say. So normally our threshold for infantile surgery is very less. In fact, when I say this, I always say, operating upon infants successfully, it actually translates into adding more productive years to a person’s lifespan. And that’s how it should be related. No, of course, it has to be balanced against the risk of infantile surgeries versus the benefits you’re going to get out of infantile surgeries, but most of the time it is possible. So again, I would highlight drug resistance should be established, a syndromic diagnosis should be made. Third, a surgical option should be found out because that is the only way to cure the problem. If it is found out then it should be executed whenever the center which is operating will be comfortable enough to execute that surgery.

Speaker: Mr. Vivek

I believe that when you talk to parents of such kids, they must be very anxious, to explain the rationale for surgery in infants.

Speaker: Dr. Nilesh

Rationale for surgery in infants can be explained and most of the time is explained in the context of the developing brain. I normally talk to the parents that we are offering surgery because we can execute it without too much of risk. So, you always make a risk benefit analysis whenever you are operating upon infants and the benefit side of operating upon infants is huge because you are actually changing the projection of cognition that can be achieved in his life. So to give an example, if the patient is to grow hundred percent without any problem, now he is diagnosed as an epilepsy at the third month of life, if you decide to operate him at the sixth month, we are losing three months, because during epilepsy, the development more or less is very low. For the same kid if you decided to operate it in nine months, you actually lost six months. So in the context of like 24 months, three months, six months is like a 20% or 30% time or that much potential you’re losing. So if you lose all the two years, probably at the end of two years the gain you should have by operating very early is already lost. So that is how most of the time I explain parents that look here, probably the benefits of operating upon an infantile brain outweighs by huge margins compared to the risks. And if you want preservation of cognition, or a good brain development, then we should undergo surgery as early as possible. The other part would be the neuroplasticity of the human brain or infant’s brain. Many of these malformations may lie on some eloquent brain, meaning few deficits might be expected. The best part about the infant brain is neuroplasticity in the same developmental brain. So the chances of recovery of deficits after infantile surgery or in surgery an infant brain is way higher than the same surgery in older children. So, even if the deficits are produced during infant surgery, there is a very high likelihood that it will be recovered to a greater extent. So, these are the two major advantages of infant surgeries is the very high neuroplasticity and secondly, the brain development.

Speaker: Mr. Vivek

What are the typical diagnoses or syndromes you find in infants which can be treated surgically?

Speaker: Dr. Nilesh

Now interestingly here, many epilepsy syndromes that happen in infants are either benign and acute symptomatic one means there is no long term effect and genetic ones. So in genetics also we really do not have too many surgical options. So once all these things are taken out, then we are left with a very few surgically remediable syndromes, so very classic surgical remediable syndrome in infantile populations, developmental malformations like hemimegalencephaly meaning the whole hemisphere is bad or large cortical dysplasia or cortical malformations or typically the third syndrome what we call is infantile spasm syndrome or West syndrome is typically labeled as. So, in these cases, surgery should be undertaken as early as possible. In west syndrome, many times you find a substrate or meaning the abnormality and few times you do not find a substrate, meaning there is no structural abnormality on MRI and still the patient continues to progress as a west syndrome. So, in these syndromes all the effort should be made to find out the structural cause in the brain by all possible investigations which are able to delineate at least some structural cause. So as to offer surgery, because in west syndrome, the chances of surgeries offering cure or offering better outcomes is way higher than the medical treatment. Otherwise west syndromes generally progressively goes on to have worse outcomes. So, all efforts should be made in West syndrome, particularly for infantile spasm to find out the focal cause, which is causing this infantile spasms or West syndrome to treat them surgically.

Speaker: Mr. Vivek

Do we need specific equipment while doing surgery on infants?

Speaker: Dr. Nilesh

Of course, infantile surgery is a very complex or tedious task. Most importantly, you need very good pediatrician support, pediatric ICU support, neuro anesthesia support and your OT should be geared up to operate upon infants. And basically it’s a team effort. I would say the surgeon is probably the last part in the infantile surgery setup. I do not hesitate in saying that a surgeon is the last part in this whole paraphernalia that you need to conduct infantile surgeries. The second part is the intricacies of infant surgeries, you should have the attitude of a pediatric neurosurgeon to operate upon infants because the blood volume of infants is very low. That is, if you consider any infant up to like 10 kg, so the blood volume may be somewhere around a liter. The chances of losing the blood volume during surgery, the margin of error is very less because infants can slip into complications because of all these things. But thankfully, with newer gadgets and newer additions into the operating rooms, infant surgery has been extremely safe. And our experience says in the last four years that we did not have a single mortality in infantile surgery cases, we operated somewhere around 25 to 30 cases so far, and they fare really well. Your team should be geared up to undertake infantile surgeries.

Speaker: Mr. Vivek

When compared to surgery in adults, is surgery safe for infants?

Speaker: Dr. Nilesh

I would say yes, because as far as our experiences say it really doesn’t matter. Apart from the extra precaution we need to take on every possible step during infant brain surgery, more or less in adults and infants, the surgeries are the same. But the more interesting part about the brain surgeries on adults and infants, the infantile brain has a huge advantage. Because in adults, the deficits do not improve to that level. So in adults, the idea is to not produce deficits at all, in infants, the brain is developing one, so even to resect that extra part of the displays here, to achieve complete seizure freedom, we have a little margin to produce fewer deficits here, because these deficits over a period of time get improved due to the neuroplasticity of the brain. So I would say I would be more keen to operate upon infants in particular situations or in particular cases than on adults.

Speaker: Mr. Vivek

What are the complications which can arise during surgery for infants?

Speaker: Dr. Nilesh

Some particular complications that happen in infant surgery are mainly intraoperative. And they are generally taken care of by the team like temperature control or a blood loss or anesthesia part but most of these complications are well taken care of or can be managed very effectively without any major hassles on the surgical outcomes. So, I would not really want to get into that technical jargon of complications on infant surgery, but I would say infantile surgeries are really safe. Yes, of course, there is some restraint that we need to put on ourselves as a surgeon and we have to take more precautions, but so far it has resulted in good outcomes.

Speaker: Mr. Vivek

That’s the point I want to touch. In your experience, how are the outcomes of surgery on infants? Have you seen a significantly better outcome from what could have been there if the surgery was delayed?

Speaker: Dr. Nilesh

Frankly, I do not have data for comparison of sets between two patient sets. But in my experience, I believe that all our infantile surgeries have resulted in great outcomes on the part of brain development. Most of the kids I operated upon during their infancy like three months, four months, five months, six months, seven months, all of them are really doing great or at par with the development of their peers, the other kids who are normal, meaning the development is almost equal to the normal kids. Now, there is little catch here that sometimes infantile surgeries fail. A child continues to have little lower or small seizures, but even that is an advantage because your major seizures are gone. And even if you have to take a little drugs or you will continue to have smaller seizures, your development is back on track. So my whole idea of advising epilepsy surgery in infants is to preserve the development because if he has a smaller epilepsy remaining, that can always be corrected at a later stage. So there are a few infants in our center that we operated on twice in a two year period. . But I’m happy that their development is at par with the other kids otherwise it wouldn’t have been because we see kids of many ages. I mean different variable ages. So when the same pathology kid came to me at two years, his development is of six months or three months child comparable to three months child or six months child or nine months child, meaning that had I operated on this kid also at the six months now he would have been more or less normal. So the highest reward point in infant surgery is the preservation of cognitive development. I mean, probably you are going to have a normal cognitive functioning kid at the end of two years, three years, whatever. So hence that’s the highest reward point in infant surgeries.

Speaker: Mr. Vivek

How is post surgery recovery for infants?

Speaker: Dr. Nilesh

Surprisingly, it is easier than the older kids and adults because infants are like, they recover so fast. And even the pain is not established in infants. So it is easier on parents to manage infants during post operative periods than the adult and older kid. I always find infantile recovery is way faster and way easier. It is easier to manage parents also for infant surgeries. I would say it is easier to manage infants in the postoperative period compared to the older kids and adults.

Speaker: Mr. Vivek

Do you want to add any other point which we have missed to cover in terms of epilepsy surgery in infants?

Speaker: Dr. Nilesh

Yes, I would want to address the fear part. Most of the people, even in the doctor fraternity, are afraid of infant surgeries and parents are also afraid of subjecting their kids and I see many parents who come to me after two years, three years later on with the same problem for the treatment, and then I find the kid has completely regressed on their development or had not achieved the development. It really feels sad. That had we operated in earlier, probably he would have been the normal kid. Now that fear part I really need to address. I want to tell you or assert here that infant surgeries are safe in geared units in well oiled up units or well established units. Here the idea of treating epilepsy is not only control of seizures here idea of treating epilepsy in the infant period is to preserve the cognition and preserve the development. If you approach the problem in the right manner, execute the solution in the right manner, you are going to have a normal functioning individual all his life. So, I normally give an example: please do not be afraid of surgeries, it is not that you are going to do the surgeries. For this my classical example is if you want to fly an aircraft, you will be afraid, but the pilot is not because it is his job to fly there. So, leave it to your doctors who are experienced and competent enough to undertake epilepsy surgeries on infants. Do not be afraid. So, just by you being afraid you are actually denying the chance of normal cognitive development to the kid. So that’s my last highlighting part. Please do not be afraid, there is enough literature evidence and enough experience evidence that infant surgeries are safe.

Speaker: Mr. Vivek

Dr. Nilesh, your inputs today help us understand epilepsy surgery in infants in detail. The key point which you made is to gain developmental time in infants, which mostly happens during the first two years of their life. And the advantage the neuroplasticity of the infant brain provides in general, because any deficits which are created can be recovered due to neuroplasticity of the infant brain. Thank you for sharing so much about epilepsy surgeries in infants with us.

Speaker: Dr. NIlesh

Thank you Vivek. It was my pleasure to be on Dr. Talks. Bye.

Speaker: Mr. Vivek

Dear listeners, please share and spread awareness about epilepsy surgeries in Infants, its benefits and rationale, potential risks and post recovery details by sharing this podcast of Dr. Talks. Cheers till we meet next time.

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