How Do You Measure Epilepsy Surgery Success? - Luke Tomycz, The Epilepsy Institute of New Jersey, USA

Hear about ways of measuring epilepsy surgery success, risks, and managing expectations. With neurosurgeon Luke Tomycz.

Reported by Torie Robinson | Edited and produced by Pete Allen

Podcast:

• Transcription

  00:00 Luke Tomycz
  “I think it's important that, you know, a lot of these families say, you know, “My child interacts better, smiles more, seems more engaged, seems less sleepy throughout the day.”

  00:10 Torie Robinson
  Fellow homo sapiens! Welcome back to Epilepsy Sparks Insights. Now, today we talk to epilepsy neurosurgeon Luke Tomycz - in part 2 - about how you measure if epilepsy surgery is a success - and, also taking into account how it isn’t all about seizures for everybody. Epilepsy surgery purposes and outcomes can vary greatly and managing expectations is a really big deal - as Luke will tell us!

  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 all around the world.

  Now, onto our star of the week, Luke Tomycz.

  00:43 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.

  01:06 Torie Robinson
  How do you assess the success or lack thereof of a patient's surgery? Do you look at that overall quality of life as well as the seizures?

  01:17 Luke Tomycz
  Well, there's a few different formal grading scales. The one that we use the most often is called the Engel grading scale.

  01:24 Torie Robinson
  Oh, Engel. I have a problem with the Engel grading scale, but I'll tell you about that afterwards!

  01:30 Luke Tomycz
  Again, that grading scale and the other ones basically, you know, Engel 1 is seizure free. Engel 1A is seizure free, but you still need to be on medicines. So again, I do have a few patients who were seizure free for a year, then they got tapered off their last medicine and they had a recurrence. They went back on the medicine and now for a few years, they've been stable with no seizures. We call that Engel 1A where they have achieved seizure freedom (which is the goal) but it requires the continuance of some of the medicine. And then, you know, it basically goes 2, 3, 4, as in significant improvement, occasional seizures (Engel 2),. Engel 3 would be no change after surgery, Engel 4 would be worsened after surgery, so more seizures. Now, that's quite rare, but there are circumstances where that can happen. Again, thankfully quite rare.

  Most of the patients that [for whom] I've had an Engel 4 outcome; I'm immediately re-operating because there's something that probably we missed. And I can talk about one of those patients here in a minute to give you a sort of illustrative case of what could happen sometimes in an Engel 4 case. But again, we usually think of Engel 1 and Engel 2 as a “good outcome”, okay? You've significantly helped that patient. You've either stopped all their seizures or you've made seizures rare. And that's something that, obviously, can have a significant impact on the quality of life.

  Now, the other thing I would say is, you know, I think it's important - and patients certainly think it's important - not just to talk about seizures, but to talk about all these other things that impact quality of life. So, you know, if you make somebody Engel 1, but you cause a new neurologic deficit, well, you know, that patient might not be very happy with that outcome, understandably. And so those are the other things that I think need to be considered is, you know: most of my patients, obviously, who are seizure free, the stories that I hear from families are good when it comes to quality of life: “My child is learning better. Everybody at school notices that they're interacting better. You know, they seem happier.” You know, I had one child with a frontal lobe epilepsy who ended up, he ended up, he got SEEG first (Stereotactic EEG), to better localise the seizures and then he ended up getting a dominant-sided subtotal frontal lobectomy - pretty extensive surgery…

  04:07 Torie Robinson
  Wow, wow.

  04:09 Luke Tomycz
  …and he had horrible behavioural problems. That was really the family. Mom was a doctor. They came from upstate New York several hours away, and really sophisticated, smart, plugged in family. And mom said “Our biggest problem - yes, the seizures are a big problem - but the behaviour is just horrible.” You know, this was a young boy, he would get violent, he would throw things, he would get into fights at school…

  04:36 Torie Robinson
  Oh gosh.

  04:38 Luke Tomycz
  …and I just recently got an email from him, he's [been] seizure free now for over a year, and they said “The biggest thing that's really impacted our quality of life is that his behaviour is better. He has friends, he's getting along with people, he doesn't get into fights…” And so I think these are some of the… I guess I would call them… sort of… adjacent issues to epilepsy, but they might be even more important than the seizures themselves. And I think the bottom line, as I tell families that look “Usually if we can stop the seizures, these other things do get better. Not always, but usually.

  05:17 Torie Robinson

  So yeah, my opinion on Engel class is, maybe goes against what some people might think. So I would consider myself, I think Engel class 3. But, because my expectations were managed prior to surgery, okay “These are your likely, the likelihood of you having no more seizures, this is the likelihood of this, this and this. And these are the potential risks.” (which we discussed before): I didn't really expect too much. So then, when I come out the other side and I'm still on some medication, still having some seizures but far fewer, to me that is a successful surgery because my expectations were managed.

  05:55 Luke Tomycz
  Yeah, that's an interesting point. I do think it's really important to talk about these different scenarios before surgery. Obviously, if you think that seizure freedom is what you're going to get and you don't, that is disappointing. But in your case, it sounds like you weren't sure what to expect, but you knew that a small improvement might be what you get. It could be more. It sounds like you were happy with what you got.

  You know, I think the other thing too, is, everybody tolerates surgery differently. You know, I've put some patients through a very big craniotomy, and within two, three days, they're looking at me saying “Hey, we're ready to go home!”.

  06:40 Torie Robinson
  Amazing!

  06:40 Luke Tomycz
  We don't have much pain. And then I've put patients through a laser case where, you know, now we're doing a lot of laser ablation, so no craniotomy, just a small incision - you put a laser electrode in. And usually patients go home the day after that kind of surgery. But I've had a few patients that have headaches and they have pain and they stay three, four days. And I think, you know, it's just how it is. I mean, I think everybody's just a little bit different in their pain tolerance and how they cope with surgery. Because, you know, surgery, being in the hospital is difficult, right? You know, it's not your environment. It's a little bit, maybe unpleasant, maybe the food's not so good, it's scary, it's painful, you have IVs, you know? And so I think we have to be sensitive to the fact that everybody's gonna go through this experience differently.

  07:31 Torie Robinson
  Another thing I wonder, and I wonder of your opinion, is should this be part of Engel class or other ways of measuring surgery success? Should we take into account things like mental health and impacts on things like sight and movement disorders? Because as you kind of mentioned before: the outcomes can be measured sometimes not just by seizure frequency or severity after surgery. Do you look at that side of things?

  07:56 Luke Tomycz
  Yeah, absolutely. And I think, you know, your own feeling that the Engel class is not really adequate. It's not just your feeling. This is something that's been discussed at epilepsy conferences:are we really capturing the effect we're having with this relatively simplistic… you know, it's, it's useful and, but, but it's, it, it doesn't really delve into all these other questions, you know?

  Look, there are a lot of other factors after epilepsy surgery that maybe could be looked at and ought to be looked at as part of the outcome. I mean, I'll give you an example: you know, I do a number of callosotomies. Callosotomy is, they used to call it “split brain surgery”, but it's actually…that sounds horrible(!)..., but it's actually a small incision, small craniotomy, and it's actually quite an elegant, delicate surgery where we don't have to go through brain. We just kind of slip down a normal fissure, and then we cut those wires that connect one hemisphere to another. We are rarely doing that type of surgery for seizure freedom. But most of the patients and families really see the effects. And I hear things like, you know, sometimes it's done on relatively normal children, but a lot of times callosotomy might be done on a child who's highly autistic, non-verbal, sometimes wheelchair-bound. And again, I think it's important that, you know, a lot of these families say, you know, “My child interacts better, smiles more, seems more engaged, seems less sleepy throughout the day.” Now look, some people might look at that and say “Is that successful?”. I'll tell you what, for that family, it's a big deal. And it does make a difference. And if you can conduct a surgery like that safely and get these kinds of outcomes then… You know, Engel class for most callosotomy patients is 3, right?

  09:58 Torie Robinson
  Right.

  09:59 Luke Tomycz
  They're, you know, they get a little bit better, but they certainly don't go to rare, disabling seizures. We did one meta-analysis on corpus callosotomy: chances of seizure freedom are hovering the teens, okay, it's not, it's not high. But, you know, these kinds of, these are the kinds of improvements that, uh, aren't really getting captured in the grading system and, and again, they've done post-op surveys of families who have gone through callosotomy or put their children through callosotomy. And again, overwhelmingly those surveys show that families are happy they went through it. They feel like they're, you know, those outcomes are sometimes hard to quantify, but they feel like they have a child who's more, as I mentioned, interactive, engaged, and again, the seizures can sometimes be shorter, less severe, you know, things like that. So again, that's not really appreciated by the Engel scoring, but it might be a significant quality of life improvement for the family.

  11:01 Torie Robinson
  And, what would you say is the worst thing that you have experienced - this wasn't on our list of questions (!) but,,, [and] you don’t have to answer - but as a neurosurgeon I guess, maybe, could be the death of a patient or the worsening of seizures as a result of surgery? What would you say?

  11:17 Luke Tomycz
  I've done close to, probably done over, now, 75 hemispherotomies. So this is a relatively extensive surgery, and it's a higher risk surgery, and I've lost 1 patient - not during surgery, but he died about 3 months later. He was actually seizure free but he developed something called Low Pressure Hydrocephalus and…

  11:44 Torie Robinson
  Oh, ok, yeah...

  11:45 Luke Tomycz
  You know, thats, look, I mean, I think, you know, I always tell patients who are going through hemispherotomy that I have lost 1 patient because I feel like it's something that I owe it to future patients to tell them about that. I think most patients are still reassured because again, I do have a very big experience, but you know, look, I think, you know, surgery is surgery. I tell people, you know, I'm not selling you a car. I'm partnering with you in an intervention, in a healthcare intervention that, you know, we have a very good, well-trained, high-volume team, but it doesn't mean everything always goes perfectly and there are risks. And I think, you know, that's part of what we do as surgeons and what we have to do honestly and carefully with our patients is describe those risks and make it clear that, you know: the risks are small. We think we can manage them in certain ways, but you need to be aware of them because if you're not and you get surprised by it, that's when there's understandably real frustration, disappointment, and unhappiness in the part of our patients.

  I think the other thing I would say is [that] the more that I operate on patients with epilepsy, you know, we increasingly become aware of a cohort of patients. You know, we all know of the term “Drug-Resistant Epilepsy”. Well actually, increasingly in the literature, we've seen the term “Surgically-Refractory Epilepsy” where patients have been operated on and we still can't make them seizure free.

  13:22 Torie Robinson
  Yep.

  13:22 Luke Tomycz
  And so, you know, I recently, just two weeks ago, implanted a patient bilaterally and we saw three different areas that seemed to be independent generators of seizures. And, you know, again, you tell a family like that “Look, there are surgeries we could offer you that we think are palliative, that we think will help you, but we don't know of anything at this point that will make you totally seizure free and we don't wanna make that promise.”. And so I think, look, it's hard. It's hard to put a patient through surgery and they're still not totally seizure free and they're still dealing with seizures as part of their life. But I think, you know, as long as we are honest with our patients, as long as we give them the numbers as best as we know them. Because again, sometimes everybody's a little bit different.

  14:10 Torie Robinson
  Thank you to Luke for sharing with us what the potential outcomes of epilepsy surgeries can be, and how it is crucial to manage expectations and share potential risks. Next week we shall talk about “Why Aren’t Patients that need epilepsy surgery, getting it?” - so make sure that you join us!

  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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