Newswise — Most neurologists and epileptologists do their best to show compassion and empathy for their patients with epilepsy. But imagining yourself in the shoes of someone with epilepsy is different than actually being there.
Sharp Waves talked with a medical student in the United States who also has epilepsy. He took a year out of his medical training to be surgically evaluated and receive a responsive neurostimulator (RNS) device.
How does he manage his epilepsy and his medical training, and how is his epilepsy affecting the way he plans to practice medicine? Let's find out.
The following is the transcript of the episode.
You can listen to all Sharp Waves episodes on Spotify, Apple Podcasts, Google Podcasts, Amazon Music, or the ILAE website.
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Most neurologists and epileptologists do their best to show compassion and empathy for their patients with epilepsy. But imagining yourself in someone else's shoes is different than actually being there.
Sharp Waves talked with a medical student in the US who's also done graduate coursework in neuroscience. He's considering a neurology specialty; he’s 28 years old and is an avid rock climber, mountain biker, and skier. He also has epilepsy. He took a year out of his medical training to be surgically evaluated and receive a responsive neurostimulator (RNS) device.
How does he manage his epilepsy and his medical training, and how is his epilepsy affecting the way he plans to practice medicine? Let's find out.
Richard Nolan: My name’s Rick Nolan, I’m a third-year medical student, rounding out my third year at West Virginia University. I've been here for undergrad, neuroscience in grad school, and now med school. I was actually in the neuroscience PhD program here. I didn’t end up finishing my PhD; I had some issues with my advisor leaving and it just worked out better for my interests to just kind of transition into medical school. I’m still able to do research and things like that, so it definitely checks all my boxes. I’m originally from Colorado but I’ve lived in West Virginia for quite a while.
Kind of a fun thing, I published a study about my own brain along the way – I have a cortical malformation, it’s called a paraventricular nodular heterotopia – it’s like a little bundle of gray matter that didn’t migrate out to the cortex, it just kind of stuck along my ventricle.
Oh, that’s cool – you were like your own research subject! …Can you talk a little bit about your epilepsy history?
Nolan: So I never had a problem with seizures until I was I think 21 or 22, I had my first seizure. I went into the epilepsy monitoring unit (EMU) just for routine EEG, and then ended up having a video EEG. I got kind of a workup there and ended up being managed by a general neurology clinic, and continued to have problems over the course of the next year, so I was eventually transitioned to a dedicated epileptologist. I had my care managed for a few years with her, and I was still having issues. This is when I was in medical school. I continued to have occasional seizures.
Luckily, I’ve had only two generalized tonic-clonic seizures ever, and they’ve both been in the EMU, so a pretty safe environment. I usually have either partial or complex partial seizures. I continued to have those in medical school and kind of decided with my neurologist that it was prudent to pursue a surgical option. I ended up having a (responsive neurostimulator) RNS device implanted, so I went through the whole intracranial EEG monitoring, which was a pretty terrible experience, but had that RNS placed. So now here I am, that was in between my second and third year of medical school so I had to take a year off.
So during your first couple of years of medical school, you were still having seizures.
Nolan: Yes ma’am. I had probably a seizure frequency of maybe between one to five times a month, something along those lines, during my first two years of medical school.
I tried to stay, I’m luckily just kind of a positive person so I tried to stay positive about the whole situation, but it’s definitely distressing. It would get in the way of my studies sometimes, and honestly, I was probably in kind of denial about it for a while, about the fact that this had gotten to the point where it was refractory to medications and further steps likely needed to be taken. But kind of toward the end of my second year, after some conversations with my neurologist, we came to the decision that we needed to pursue a surgical route. It was kind of hard to deal with. It’s been an interesting experience. Definitely had an impact on my mental state somewhat, somewhat on my studies, and things like that, but I’ve tried to stay positive about it.
Did your epilepsy affect your decision to go to medical school, and how is it affecting your training and how you’re thinking about interacting with patients?
Nolan: It definitely played a role in my decision to go to medical school. It was one thing that got me kind of really interested in neuroscience to begin with, before I went to graduate school. My advisor was one of the neurosurgeons here, so I ended up having a fascination with neurology and neurosurgery in particular, especially functional neurosurgery which is kind of ironic, with where my treatment course went. But I feel like it’s given me kind of a personal view, especially a chronic health condition that affects a lot of aspects of my daily life, in dealing with patients who have similar conditions. It doesn’t have to be epilepsy, really anything, I think it’s helped give me insight on how that affects them on a personal level as well as the medical side of things. It’s been beneficial in that regard.
Right. So you have a unique perspective as someone who’s going through medical training who’s also had a surgical workup and an invasive surgical procedure. Can you talk a little bit about that?
Nolan: After kind of deciding that the surgical route was probably a good option for me, especially with this known cortical malformation, because that may have been the cause of my seizures, I ended up having – COVID delayed all of this, I was only supposed to be out for a couple of months, but it ended up taking the whole year – but I had 13 intracranial electrodes placed. I had really nice long hair before, and I had to shave it off and donate it. I stayed in EMU for I think six days with those. That was actually by far the worst part of all of this in terms of treatment. I’m a really active person and you’re not even allowed to get out of the bed at all, so that was really difficult for me. It was a frustrating experience. It was physically uncomfortable, but the impact it had on my mental state while I was in there was probably the worst part for me.
A lot of my treatment team knew where I was in the process of my medical education and everything. It was nice to be spoken to at the level that I wanted. You know, at that point I’ve developed enough knowledge of what’s happening to kind of know what was going on. They all communicated with me super well, so that was very much appreciated and made the whole experience a little bit better.
That whole process, it was uncomfortable but not terribly painful. The biggest impact on me was… the physical manifestations were not as bad as how I was doing mentally in that position. That gave me pretty good insight from my perspective as a medical student and future physician, when I see people who’ve been in a bed for, this is their 14th day of admission or you know, whatever day it might be, it’s pretty easy to kind of blow that off, but that really does have a big impact on your psyche and how you deal with everything. At the time it was unpleasant, but it really did give me a pretty good insight on thinking about length of stay of patients and things like that.
So that was beneficial, definitely, and after they removed the electrodes, I had to wait for my results. That was kind of hard; that was another just waiting game. Getting my results back was a little discouraging too, because as I have this little cortical malformation, I was really hoping that the seizures were coming from that, because that may have been easier to address in terms of surgical resection or some sort of ablation, but my seizures weren’t stemming from that. I had some foci in my temporal lobes, so the resection was taken off the table at that point. That was kind of hard to deal with.
I think it was pretty soon thereafter we discussed the RNS treatment and after being explained the pros and cons of the treatment, the procedure, doing my own research on it, that seemed like the best option. Because, especially in this field, I want to have the best seizure control I can for myself, for my patients, for everybody involved.
So was that like a year ago?
Nolan: I had my intracranial EEG I think in April or May of last year, so about a year ago, and then ended up having the RNS implant in I think late June or early July. It was 2 ½ weeks before I came back to medical school, so that was something!
Yeah, how did that go? Was there much recovery time?
Nolan: Apparently I did pretty well with it. I only had to stay in the hospital overnight, was discharged the next day. This device sits in a little titanium tray, maybe 2 ½ inches by 3 or 3 ½ inches. I had a craniotomy, they put the titanium tray in, put the device in the tray, and I have two depth electrodes going to each of my temporal lobes. The recovery process from that… the first couple of days were pretty bad. They gave me some good painkillers and basically told me to lay in bed for a couple of weeks. I think I had 80-some staples in my head, so that was uncomfortable, definitely. But I ended up having a pretty good recovery period.
I got a little bit scolded for this, but I rode my bike to the clinic two weeks later to get my staples removed and when I showed up, the advanced practice provider who was removing my staples was like, “Why do you have a helmet?”
“Oh. Well, I rode my bike here!”
“People aren’t even up and walking around. What are you doing?”
“I’m going to go climb after this!”
So a bit atypical in that regard.
If you’re naturally physically active maybe that helps you bounce back, right?
Nolan: It's definitely one of my coping mechanisms, my forms of enjoyment – I’ve been an action sports athlete all my life. Grew up racing bikes, skis, dirt bikes, climbing, all that kind of stuff.
Have you had seizures or aura since the RNS?
Nolan: Unfortunately I have, and with the RNS device its efficacy, how well it works, really improves over time, so I knew it was going to take a while. As much as I wanted it to be an instant fix, it wasn’t. It’s definitely improved my seizure frequency and severity, which has been really nice. I pretty infrequently now have any sort of loss of awareness, so that’s nice. But it’s not perfect. I’m working with my neurologist, playing with some medications and things like that. It’s an ongoing process.
So it sounds like you’re interested in neurology as a medical specialty – is that where you’re headed?
Nolan: I came into medical school thinking that neurosurgery was the coolest thing ever and that’s what I wanted to do. And I kind of unfortunately had to eventually kind of come to terms with the fact that a surgical specialty just wasn’t feasible for me. It’s not fair to your patients or really anybody if you were to have a seizure in the operating room. That was something I couldn’t -- I came to terms with the fact that that wasn’t really an option for me.
But I really like brains! So definitely on the top of my list right now are neurology and psychiatry, I think the brain is super cool, the pathology is just fascinating, the room for advancements in therapeutics is mind boggling, especially with some of the interventions we have now.
Did you experience any stigma or discrimination, even from yourself? Like you said at one point you were in denial.
Nolan: During my first two years of medical school, and really before that too, I was not very forthcoming with this diagnosis. I really didn’t talk about it too much. I was afraid of the stigma. Epilepsy doesn’t have the best… the public doesn’t always perceive it in the best way. And I didn’t really like facing it, so I was pretty reserved. I didn’t talk much about it with a lot of people. Even in publishing the study about my own brain, I didn’t tell a lot of people that it was actually about me.
I dealt with that denial, the fear, stigmatization, everything, but after having the procedure, having this RNS implanted, that challenged me a lot to confront this on a personal level, and since then, I’ll tell pretty much anybody who’ll listen, because it’s kind of a fun story. It’s unique. So I’ll ramble on to people, especially about the medical side of it, that whole experience.
I was actually speaking about this this morning – in talking to you, this is one of the first times I’ve really kind of delved into the personal aspects of epilepsy and my experiences with it. I tend to still kind of keep it clinical, for lack of a better term. But I really appreciate you helping me bring this side of it out, too. It’s good to have both perspectives.
Well I appreciate you being willing to talk about it. Do you have any thoughts on how physicians could help people newly diagnosed to accept their diagnosis, accept treatment, generally speed the process of acceptance rather than denial?
Nolan: I think that kind of thought rings true for, epilepsy is an excellent example because it’s a hard thing to confront, it’s stigmatized in the public and all that, but this goes for a lot of things. Seeing a lot of this from the perspective of a medical student, future physician, it’s really easy and almost kind of protect yourself in some regards, to treat a disease and not a patient. It’s hard to think about the whole human sometimes and it’s really easy to say, "Okay, this person has epilepsy and they’ve tried this drug and this drug, so we should probably go for that, and if that doesn’t work… " and then they leave the office and that can kind of be the end of it. But the personal side is a lot to deal with, and something a lot of physicians might not think about as much.
I think it’s really important and I’ve been trying to do this more and more, to think about not just a disease process that someone is experiencing but to really also try to consider their perspective on it is really important, in guiding treatment and to know where they are in the process, if they’re going to take their medication, things like that. So kind of promoting people to have some insight is really important, and even play a role in guiding their own treatment. I think this is kind of evolving too. We’ve spoken a lot about this in my training, shared decision-making type things, give patients options, I think that’s really important and sometimes easy to not do, because for lack of a better term, you might “know better” than them. It’s a hard problem to face.
In terms of specifically epilepsy, talking to patients too, it’s a hard thing to accept and deal with. Partly due to it’s kind of a scary condition, to know that you might all of a sudden have a seizure and whatever manifestation that might have, it’s distressing.
One thing that would be beneficial would be to develop better ways to communicate to patients, not just a seizure plan, if you’re having a generalized tonic-clonic seizure, what’s your significant other going to do, what’s your mom going to do, whoever it may be, but it would be nice to have a little bit more focus on how to deal with it yourself. Because that’s something I’ve found over this process that I’ve eventually come to terms with, but it was hard to do, and that was kind of self-guided. I don’t know how to do that, but if we could have a bit more focus on how to deal with the personal struggle with it, that would be nice, be that in a neurologist’s office or a referral to another specialty like psychiatry or whatever your needs might be.
As an adult with epilepsy, how has it affected your day-to-day life and your ability to do things independently?
Nolan: With the independence you know, a lot of people can’t drive, like I ride my bike everywhere. So that can be hard. Luckily I’m in a place where I can do it, but for a lot of people that is a lot of loss of independence.
My neurologist knows I engage in some kind of risky behaviors for someone with epilepsy. I ride my bike, I rock climb, I ski, and I understand that sometimes that’s not super smart, necessarily, but I gotta do it.
Do you have a typical seizure?
Nolan: I’ve been much better controlled with medication changes, the RNS device, so right now a typical seizure for me at this point, the most common symptoms I’ll experience is, more of the focal symptoms where I’ll feel a little bit of derealization, that déjà vu feeling, that can last for a little while, but then I’ll come back to normal pretty quickly.
I still do have occasional seizures where I lose a little bit of awareness, and luckily I have it pretty good, to be honest. I usually have to tell somebody if I’ve had a seizure. But if I have one where it’s a little worse, I’ll have a post-ictal period where I’m drowsy and confused and feel really poorly. That actually happened to me a few days ago, in the middle of an exam – of a neurology exam. But luckily the course director totally understood, and she extended my time and said, “You’re good – don’t worry about it”.
But it’s still a possibility. I’ve had a seizure in the clinic before, and I’ve just told who I’d been working with that it happened and you know, “I need a little bit of time.” Everyone’s been really permitting. I don’t feel I’ve experienced much if any overt discrimination and that’s nice.
I have an excellent support system. I have a significant other who’s wonderful, she’s taken care of me throughout all my surgeries, is really supportive of me, and I’m really lucky to have that, and I know some people don’t, and that must really make it more difficult, so I think it would be important to either educate and help whoever their support system is to understand what to do during a seizure, from the medical component, but also a personal side, because it's hard to deal with for them, too, absolutely.
So getting that social support both for the patient and their support system is really important and something that is overlooked pretty frequently, in my opinion. That’s kind of my last thing.
That’s a very good point. Thanks again – much appreciated!
Nolan: Thank you so much!
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