Why Aren’t More People Having Epilepsy Surgery? - Luke Tomycz, The Epilepsy Institute of New Jersey, USA

Why are only a small percentage who’d benefit from epilepsy surgery getting it? Hear from neurosurgeon Luke Tomycz of the Epilepsy Institute of New Jersey.

Reported by Torie Robinson | Edited and produced by Pete Allen

Podcast

• Transcription

  00:00 Luke Tomycz
  ”Most of these patients can be controlled with medicines, so they absolutely should see a neurologist first. The problem is that when the medicines don't work, there's not a good mechanism for getting them to doctors who can help them. And the doctors that are in charge in many cases don't know when to appropriate.”

  00:16 Torie Robinson
  Fellow homo sapiens! Welcome back to Epilepsy Sparks Insights. Now, lots of people are waiting not just months, not just years, but some people are even waiting decades for epilepsy surgery - during which time they can experience injuries, slowing in or even regression in cognitive functions, movement disorders, behavioural issues, mental health illnesses, social exclusion, or even death. And of course, that’s not to mention, of course, in addition, the impact on families as well. So, today in part 3 of 3, epilepsy neurosurgeon Luke Tomycz speaks about what is or what might be holding clinicians back when it comes to even thinking, talking about, or referring people with refractory epilepsy for a pre-surgical workup? And a quick one: please don’t forget to like, comment and subscribe: your comment and like will help spread awareness and understanding of the epilepsies around the world. Now, onto our star of the week, Luke Tomycz.

  01:08 Luke Tomycz
  My name's Luke Tomycz. I'm a paediatric neurosurgeon by training, but now my practice basically specialises in paediatric and adult epilepsy care. And I'm the chief of paediatric epilepsy at Sanzari Children's Hospital at Hackensack, in Hackensack, New Jersey. And yeah, so that's basically who I am and what my practice consists of.

  01:31 Torie Robinson
  We've spoken of risks and even, you know, the worst: potential death during surgery - there's always these risks. But do you also talk to people about how, actually, in many cases, people's life expectancy is going to improve post-surgery? Because some people are at a very high risk of injury and death, right, if they don't have the surgery.

  01:50 Luke Tomycz
  Yeah, and that's been pretty well looked at: that there is a cumulative risk of death each year in a patient who has uncontrolled seizures. So, so, again, if we can stop the seizures over the long- term… You know, the way I look at it, I often describe it to patients is “Yes, you are taking some upfront risk with surgery, but it's not like you're taking some upfront risk, and if you don't do surgery, there's no risk.”. You're balancing risks, right? It's [the] upfront risk of surgery - which in most cases is quite small - with the known risk each year of SUDEP [(Sudden Unexpected Death in Epilepsy)], of decline in neurologic function because of recurrent seizures, and their mal-effect on the brain. And so, I think, you know, look, we always look at surgery as, you know “That’s the intervention, and if we just don't do the intervention, we avoid the risk”. Well, unfortunately, it's not like that in our patients with epilepsy. You know, unfortunately, when you have drug -resistant epilepsy, you're a little bit in between a rock and a hard place because obviously nobody wants surgery, nobody jumps towards surgery typically. Although some patients are quite excited when they find out their surgical candidates because they're so tired of their seizures.

  03:06 Torie Robinson
  That's how I felt, yeah!

  03:07 Luke Tomycz
  That’s how you felt! So again, we do certainly have those patients, but for the most part, none of us want surgery, but we realise that it's not just the choice of surgery and the risk of surgery. It's the choice of surgery and the risk of surgery versus the risk of living with epilepsy. And there is a risk of living with epilepsy.

  03:29 Torie Robinson
  And I'd say, especially for children, that we hear, as you kind of implied or we implied near the beginning; that people are not getting the help they need for epilepsy, generally speaking, in this world. And many, many people should be, in my opinion, referred for surgery more earlier than they already are. I mean, I've read in literature, there's an average of like 20 years in both the US and the UK before somebody's referred for surgery. And I can say, you know, from personal experience, that is absolutely, it's immoral, actually. But when we know that we can help so many people, we can prevent them from having cognitive difficulty later in life (at least to a degree), we can, you know, lengthen their, increase their life expectancy and quality of life many times. Of course these are generalisations but I can say as a person who's experienced this, this is why I'm delighted to talk to you, is that: we need more people like yourself. We need more surgeons who are going to be able to analyse us and say okay this person is suitable or not and actually help us get the surgery but also ensure that we are cared for afterwards - because it's obviously not a one-night thing.

  04:34 Luke Tomycz
  Everything you're saying is true. So I'll take it a few things at a time. There is, there are a lot of patients who could benefit from surgery who aren't getting it. About two years ago, we wrote a paper for Epilepsia entitled “Deciphering the Treatment Gap” [(Deciphering the surgical treatment gap for drug-resistant epilepsy (DRE): A literature review)]. And we really carefully looked at this literature and reviewed it. And, you know, by most estimates, we're probably treating anywhere from maybe 2 to 8 percent of appropriate surgical candidates. Which means the vast majority who could benefit from surgery are not getting it. In many cases, they're not even hearing about it.

  05:15 Torie Robinson
  Right.

  05:15 Luke Tomycz
  So let me tell you about my practice. I know. Let me tell you about my practice because again, I see, I take care of mostly epilepsy patients now. It's almost every week that I speak to a patient who says something along the lines of, you know “Dr. Tomycz, I've been having seizures for 8 years or 10 years or 15 years. And I've had 5 neurologists or 8 different neurologists and I've been on 5 medicines or 10 medicines. Why is this the first time that I'm hearing I could be a surgical candidate?”. And honestly, it's gotten to the point where it's devastating when I hear this. I feel like it's a tragic situation for this patient because here we have a patient in front of us who's not afraid of surgery. They want surgery. In fact, many of them say “I've been asking for it. I've been asking any neurologist who will listen, could I be a candidate? And they all say, no, no, no, no.”. Well, but then, but then they end up getting surgery and they end up getting seizure free. There was a study that looked at patients who get surgery and are seizure free after surgery. And they were asked, what were the obstacles for you to get to the OR [(Operating Room)]? More than 50% of them said the obstacle was their epileptologist. Now, yes.

  06:24 Torie Robinson
  Not even solely a neurologist but an actual epilepsy specialist (an epileptologist)?!

  06:29 Luke Tomycz
  Certainly, look, certainly there is a difference between a neurologist and an epileptologist. A big difference, you know, in training and in knowledge. But, but the unfortunate fact is that we know, you know, I'll just tell you,m: we did a quality improvement study here at our hospital and what we saw… we took all of the patients, we did an EMR (Electronic Medical Records) search and all the patients with the diagnosis of epilepsy who had already been tried on three or more medicines. So according to the American Academy of Neurology, if you have epilepsy, you've been tried on three or more medicines, you should be referred to a surgeon or a surgical centre, a multidisciplinary centre that includes surgery. And we found that something like 5% of these patients had any surgical note. Which again means that the epileptologist (in many cases) is simply trying a new medicine. And trying a new medicine. And we know - there's very good literature back in the New England Journal 2001 (I think), saying that if you've tried two medicines, the chance that the third will work is about 4%. And by the time you get to the fourth and fifth, we're talking, it's probably not a good, it's probably not gonna work. And so, again.. and you could go more into that data. You could look at patients with Cortical Dysplasia or patients with Mesial Temporal Sclerosis, or patients with a lesion, and say that, you know, again, their chance of getting seizure-free with medicine is very low, even at the onset. And so, I think, you know, I don't… look, I'll tell you, even though I've thought about this problem for years, I don't fully understand it. But what I can tell you is that surgeons operate for a living. So obviously, I'm looking for patients I can help with surgery. because that's what I do.

  08:23 Luke Tomycz
  Neurologists give, you know, they play a very important role. I'm not diminishing the role, but I think there is this “in between…”. So they read EEGs, they treat with medicine, they manage the patient with epilepsy sort of broadly. But I think in between surgery and in between epilepsy is this field of well “Who identifies the surgical candidate?” And I'll tell you, we didn't get much training in residency about how to do that. And I don't think epileptologists do either. And so it's almost like a discipline in between disciplines. And there's, you know, every centre does this differently and I think nobody does it very well, unfortunately. Some places do it very well, but for the most part, you know, there's a gap and there's a deficit here. And that's been extensively written about. I mean, there have been surveys of neurologists, even just having neurologists appropriately define Drug Resistant Epilepsy, you're going to have a hard time referring to a surgeon.

  09:33 Torie Robinson
  Yeah!

  09:34 Luke Tomycz
  But there are studies everywhere from Michigan to Norway showing that fewer than half neurologists are able to appropriately identify Drug Resistant Epilepsy. Well, that's a big problem, right? It's a huge problem. Because these doctors are the gatekeepers, right? They're never gonna come see me as a surgeon first, right? They're gonna see a neurologist first.

  09:53 Torie Robinson
  Right!

  09:54 Luke Tomycz
  Most of these patients can be controlled with medicines, so they absolutely should see a neurologist first. The problem is that when the medicines don't work, there's not a good mechanism for getting them to doctors who can help them. And the doctors that are in charge in many cases don't know when to appropriate. You know, I'll just give you, just yesterday: saw a new patient for epilepsy referral from a neurologist with Temporal Lobe Epilepsy, okay. Referred to me for Vagal Nerve Stimulator. Well, is that appropriate? No, it’s not appropriate. Vagal Nerve Stimulator is something that very rarely leads to Seizure Freedom and should be reserved for patients who don't have a resectable, a focal resectable epilepsy. But guess what? Temporal lobe epilepsy is the classic surgical epilepsy, right. We should be looking to see if they're candidates for temporal lobectomy for potential cure, not just sending them for Vagal Nerve Stimulator. And again…

  10:53 Torie Robinson
  Even to me that sounds wild, like even I know that just like that doesn't make sense.

  10:42 Luke Tomycz
  It sounds wild, but it happens all the time. And I think we actually wrote an article about Vagal Nerve Stimulation specifically, because, you know, what we wrote is that there's an overutilisation of Vagal Nerve Stimulation for patients who could be cured by an intracranial procedure, and they're just not getting it. I'll tell you, when I moved to New Jersey, I think something like 40 out of the first 50 patients I operated on had a Vagal Nerve Stimulator and I ended up doing a surgery, they were seizure free, and then I removed the Vagal Nerve Stimulator. They need it in the first place, I don't know. I mean, probably not, right? If there's a better option that can lead to seizure freedom, why would you use a device that is - at best - generally palliative, you know? And so, but, going back to why this happens, why does it happen? Well, I'll tell you why it happens - and this has been written about by neurologists who are at centres that are seeing a lot of epilepsy patients - but not doing a lot of epilepsy surgery - simply don't know what's available. They don't know that there could be a curative option. So when they fail two or three medicines they say, VNS, let's sign you up. It's easy because almost everybody's…

  12:10 Torie Robinson
  Yeah.

  12:10 Luke Tomycz
  …a candidate for VNS. You have focal epilepsy, you're a candidate for VNS. You have generalised epilepsy

  12:14 Torie Robinson
  [It’s] not hard.

  12:14 Luke Tomycz
  …Lennox-Gastaut, you're a candidate for VNS. So, you don't have to do that much thinking to say “VNS”. But you do have to do a lot of thinking to figure out, okay “If we're gonna implant you, we gotta know where to implant you. You might need a PET scan. You might need an Ictal SPECT. You might need a MEG. You might need a Wadar. You might need a functional MRI. And so again, this is something that's our kind of bread and butter and this is what we're doing all the time, is trying to be surgical about how we think about epilepsy. Can we find focality? You know. And I could go on and on about this, but you know; recently, I got, you know - I mentioned to you we now have an international program, we’ve treated a number of patients…

  13:00 Torie Robinson
  Mm-hmm.

  13:01 Luke Tomycz
  …we were referred a patient with, you know, diagnosis of Lennox-Gastaut, but my first question was did you get a PET scan ever (did your neurologist ever)? The answer was no, we didn't get a PET scan. We've been told we have generalised epilepsy. So I talked them into getting a PET scan. They finally got a PET scan to call me a few months later. Guess what? The PET scan is clearly unilateral. Hypometabolism on one side of the brain, not the other. So again, it's an example of a case that might very well do well with an implant and then a focal resection, but had sort of been, you know… there's a funny thing in medicine: If you don't look, you never find, right? So, a lot of times if you don't get a PET scan, you don't know that there's a focality. I think, let me just say one other thing, and I'm going on a bit too long on this point(!), but I think one of the most important things that we see are patients with normal MRIs. So, I can't tell you how many times…

  13:57 Torie Robinson
  Right. And how frustrating is that?

  13:58 Luke Tomycz
  So I can't tell you how many times I hear from patients with normal MRIs “Well, I would love epilepsy surgery if I was a candidate but my neurologist told me I'm not because I have a normal MRI”. Well, that's just simply not accurate, okay? A big part of my practice is MRI negative patients, patients with normal MRIs. Guess what? We get them seizure free, but it requires more work. A lot more work.

  14:24 Torie Robinson
  MEG and...

  14:26 Luke Tomycz
  You know, in those patients, we generally get almost all of the non-invasive imaging. PET scan and SPECT scan, you know, metabolic imaging, as well as Magnetoencephalography. But long story short, you can get it, but it takes work, it takes time, and….

  14:43 Torie Robinson
  Takes money…

  14:44 Luke Tomycz
  Money! And it takes explaining to the patient “We're starting a process that might last 6 months to figure out if you're a surgical candidate or not.”. And listen, that's something that again, I think I've gotten better over time of telling patients “Look, this is our first time meeting today. I don't know if you're a surgical candidate or not, but if you wanna explore it, we're gonna start the process. You have to get a new EEG. You have to get admitted to the hospital for 72 hour EEG or longer - for ictal capture. You need a new MRI. You only have a 1.5 Tesla, I need a 3-Tesla MRI. You need a PET scan. You need perhaps an Ictal SPECT, again, not everybody's a candidate for that, but [for] some patients it's very useful. You might need a MEG. You might need a Wada [test] if you're left-sided and you're worried about language or functional MRI. So, you know, it's the beginning of a long process of investigation. And again, as we mentioned at the very beginning of this conversation, this is not, you know, taking out a tumour in the brain on the surface, or, this is not taking out a spinal disc herniation where I might make that decision and sign the patient up for surgery in two weeks…

  15:54 Torie Robinson
  Right.

  15:55 Luke Tomycz
  …and the end of it. No, this is a really involved thing and it should be, and I think look, patients deserve that kind of investigation to make sure that we're doing the right thing.

  16:03 Torie Robinson
  So, epilepsy surgery challenges aren’t limited to what we’ve spoken of in this episode. There’s funding, politics, egos, discrimination, education (or lack thereof), and access to specialist epilepsy neurosurgeons who aren’t just good, but amazing. But, it is possible - I found out myself. There is hope and we have millions of people - children and adults alike - with refractory epilepsy - who’s lives are worth improving and saving. Thank you to Luke for sharing his passion for improving the lives of people through epilepsy surgery! This is episode 3 of 3 with Luke and you can catch the other 2: “The Safety & Efficacy Of Epilepsy Surgery” and “How Do You Measure Epilepsy Surgery Success? - Engel Class?” via YouTube or podcast. Again, if you haven’t already, don’t forget to like, comment, and subscribe, and see you next time!

• About Luke

  Dr. Luke Tomycz is a neurosurgeon living in New Jersey, board-certified by both the American Board of Neurosurgery (ABNS) and Pediatric Neurosurgery (ABPNS), specializing in the surgical treatment of complex epilepsy.

  Hailing from Michigan, Luke finished first in his high school class before going to MIT to double-major in chemical engineering and biology with a minor in biomedical engineering. He was one of the few students in the country to be awarded a prestigious Dean's Full-Tuition Merit Scholarship to attend the University of Michigan Medical School where he was initially exposed to neurosurgery.

  Following medical school, Luke performed 7 years of neurosurgical residency at Vanderbilt University Medical Center in Nashville, TN during which time he completed an in-folded neurointerventional fellowship. Finally, he spent an extra year of training with Dr. Jeff Ojemann at Seattle Children's Hospital where he was first exposed to a high-volume surgical epilepsy practice.

  Having built one of the largest surgical epilepsy practices in the state, Luke is committed to the idea that all patients with DRE deserve a consultation with a surgeon to receive the latest information and hear all the options about surgical procedures that may help them or their family members who are living with epilepsy.

• Links to Luke

  Website: epilepsyinstitute.com

  LinkedIn: luke-tomycz

  Twitter: brainsurgeonlt

  ResearchGate: Luke-Tomycz-2

  TikTok: @epilepsyinstnj

  The Epilepsy Podcast: https://open.spotify.com/show/2BFd1QGl0XskgeimS90UpC

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