Epilepsy surgery outcomes: Two experiences with life-changing consequences

Christina Rezek and Brad Levy each have daughters who underwent epilepsy surgery, with dramatically different results. Sharp Waves talked with them about the journeys to and through epilepsy surgery, the consequences, and what they have learned.

Brad Levy is a founder of Epilepsy Awareness Day at Disneyland, a free event held every November in Anaheim, California, USA. Visit epilepsyawarenessday.org for more information.

Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.

Let us know how we're doing: podcast@ilae.org.

The International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, X (Twitter), Instagram, and LinkedIn.

Transcript

[00:00:00] Nancy Volkers: So thank you both for joining me on this episode of Sharp Waves about epilepsy surgery.

And I think I'm just going to jump right in and have each of you introduce yourselves and your daughters, and then talk a little bit about your daughter's epilepsy history. So we can tag team on this. I don't know if Christina, you'd like to start. 

[00:00:22] Christina Rezek: Very good. My name is Christina Rezek and my daughter who has epilepsy is Lissa Rezek. She developed her epilepsy when she was 15. That was her first witnessed generalized seizure. In hindsight, she has probably had it her entire life. But hindsight is 20/20, it is what it is. That's me. 

[00:00:47] Brad Levy: Hi, I'm Brad Levy. My daughter is Sophie and our story goes back about 20 years. Sophie was 5 years old when she had her first clinical seizure, the one that we noticed. And like Christina just said, after talking to doctors for several years we've come to the conclusion that she was probably having seizures for a couple of years before the one that we actually noticed, as, you know, they start out very mild and hard to notice. Clearly we weren't missing the ones that were causing her to bounce out of her chair, and you kind of know the story from there.

[00:01:28] Nancy Volkers: Great, thank you. So could each of you talk a little bit about how much you were told about your daughter's epilepsy, how it was managed and how it affected your family until the point where you decided on surgery. So, sort of from diagnosis up until surgery.

[00:01:48] Christina Rezek: Lissa had her diagnosis when she was 15 during her formative teenage years, it was a quite a bit of a struggle. She did have a very good neurologist who was a champion for her after her second trial of medicine. He referred her to an epilepsy center to continue to try to get her seizures under control.

She tried 20 medicines or more. Multiple medicines we tried twice. She had multiple injuries from her seizures. It was at that point I said no more and asked her epileptologist what more we could do. And that's when we looked into surgery.

In my background, I am a neonatal intensive care nurse. And so I became an epilepsy researcher after Lissa's diagnosis.

[00:03:01] Brad Levy: Oh, boy. So. The first four years were kind of crazy. Sophie's first seizure we dialed 911. We had never seen anything like it and had no history or any understanding of it. Neither of us had ever even seen a seizure before other than maybe on TV.

Paramedics came. They looked at us and said, “What's wrong? She looks fine.” And they left. A couple days later, she had the second event. Paramedics came back, same story, except that they looked at us and said, “Hey bro, your kid's got epilepsy. You need a neurologist and stop calling us.”

So we started our winding road then. We immediately went in and saw somebody that we thought was going to be the answer because of her credentials. She ordered the MRI and within two hours of meeting this person, she decided that our daughter has brain cancer and sent us to pediatric oncology. So after we picked ourselves up off the ground in that office and made our way home, we ended up looking for another answer and found yet another doctor who completely contradicted that doctor. They looked at the MRI, noticed the growth and said, “No, that that's not cancerous. That’s nothing to be concerned about. You've got to just stay the course and find the right medication.”

So we had four years of people contradicting each other, changing the medications and telling us that she had different types of seizures until we finally got to a doctor that thought outside the box and just shook her head looking at all the notes and said, “You know, if these guys just could all play nice together in the sandbox, you would have had answers already instead of contradicting each other.”

So that was a four-year struggle of medication that did nothing except cause her hair to fall out, you know, side effects like crazy. Keppra rage was, was very real. And we just couldn't get a handle on things until we finally met with a doctor who looked at that MRI again and put it up on the big screen for us and said, “What part of this image looks right to you?”

I mean, it's kind of simple to see a seven-centimeter, golf-ball-like lesion on the side of the brain. And that's what got us to the epilepsy surgeon, who ended up changing our life.

[00:05:24] Nancy Volkers: Wow. So Brad, for you, you said it was four years between diagnosis and, and surgery. Christina, I think for you, you said it was about a year. Is that correct? So that's….

[00:05:39] Christina Rezek: Yeah, it was a year. 

[00:05:41] Nancy Volkers: Okay, despite the trials and tribulations, you both had to go through, you got to surgery at some point and then maybe if each of you could talk a little bit about that process. If you can remember, how much were you informed beforehand about the risks and benefits, and then after the surgery, what was it like? Was there like a long rehabilitation process? Was there, how did that go? As much as you can recall, since it was some time ago. Christina, would you like to start there? 

[00:06:21] Christina Rezek: Sure. Lissa spent three days in the epilepsy center, they did multiple testings—neuropsychological testing MEG scan, PET scan, all the scans, to try to decide if she was a candidate for surgery.

They did determine that she was a candidate for surgery and talking over with my daughter and my son, my family, basically we opted to try surgery. Lisa had a spot removed from her right frontal lobe in her very first surgery. They did struggle to find that spot. In hindsight, she has multiple spots in all areas of her brain. So that's why they were having trouble. But we were told that it had about an 80% chance of success. The usual surgical complications—bleeding, loss of use of different parts of her body, death also was listed.

So, we did sign the papers and she had her first surgery. Her recovery was really uncomplicated. She had some weakness, and we did therapy. And she went six weeks without a seizure, which was amazing as she was having multiple seizures a day. 

And then her seizures came back with a vengeance.

 She developed drop seizures, and that's when she broke her teeth off. She had her second surgery, with corpus callosotomy And I would do that surgery over and over and over and over again. Those drop seizures went away the minute she had that surgery.

No complications with that surgery at all. Her final surgery… and she had a few surgeries in between. She had her entire right frontal lobe removed except for the motor cortex. She developed hydrocephalus, which was not a complication that I knew about, but I knew enough about hydrocephalus to know that that would be an easy fix.

And then her final surgery was in her left frontal lobe. They removed a spot and then they did multiple subpial transection trying to chase the electrical activity of her seizures all the way to the back of her head, and in that surgery they damaged cranial nerves. 

We were not told about the risk of damage to the cranial nerves. In hindsight, as a nurse, when they removed the skull cap, the cranial nerves are right there. So you know, I do know that now that that's a risk. 

She spent quite a bit of time in a rehab facility. She lost her ability to utilize her tongue. She can no longer use a lot of the muscles in her face. So she cannot speak. She cannot chew. She can bite, but she cannot chew. So she's limited in eating and does have a feeding tube for days when eating is not possible. 

And then her swallow, which was the one that scared me the most, because if you cannot protect your airway when you swallow, you end up with a trach, and that was my biggest fear. Luckily her swallow came back enough that while it's not great, she can protect her airway.

So those are her outcomes from her surgery.

[00:10:43] Nancy Volkers: And Christina, how long ago was that last, the final surgery? 

[00:10:50] Christina Rezek: She had her final surgery in 2018. 

[00:10:54] Nancy Volkers: And how old was she at the time? 

[00:10:57] Christina Rezek: She was 18.

[00:11:00] Nancy Volkers: So she lives at home with you now? 

[00:11:04] Christina Rezek: Yes, she lives at home with me. Communicates with her phone and her beautiful smile. Her eyes tell you anything you need to know, really. And she has a lovely service dog that tells her when she's going to have a seizure. He's amazing. We found her service dog group when we met Brad.

[00:11:32] Brad Levy: I love this family. I've known them for so long and I just, the story is like….

[00:11:38] Christina Rezek: I know Brad, because I know you only heard part of Lissa's story and we didn't find out about her cranial nerve problem until her adult neurosurgeon was replacing her vagal nerve stimulator, which I didn't even talk about as a surgery. And he listened to my entire story, telling Lissa's entire story, and this stoic man, when we were done, had tears in his eyes. He came to me and said, “Miss Rezek, I have to inform you that your daughter had damaged cranial nerves, not complications from her surgery.” 

So we didn't find out until Lissa was 23 that it was cranial nerves that caused her problems. 

[00:12:41] Brad Levy: Wow. Well, it makes our story look like scratching your knee and putting a band-aid on it because I talk to so many families and I hear the stories and it's, I just, you know, people say I count my blessings. Well, believe me, I count my blessings every day and I try to give back a little every day because I know I owe.

Sophie's surgery was, it was easier than repairing a car. I mean, the doctor was so confident. He had everything really well mapped out. They knew the area that they wanted to address and they were positive that they caught the focal area. The EEGs all reflected the same area that the MRI showed and the PET scan.

And then when they did the Wada test, where they basically anesthetize the brain of the area where they want to do the work to see what kind of deficits that we would incur from doing work on that area, they realized that most of her function from her left temporal had already shifted. So when they shut the left temporal area off, they expected her to not speak and to have less motion and short-term memory and some other things but she just plowed right through the test and kept talking the whole time. So the doctor was pretty confident that she wasn't going to have any deficits.

 The doctor said that Sophie could have about a three-month recovery period. But I'm asking questions as the uneducated parent, like, how do I protect that area on her head where you're making the incision? Is she going to be wearing a helmet for the rest of her life? You know, is she allowed to go on a roller coaster or a rocking chair or a horse? And he laughed at me and said, “Yeah, you know, give it some time and you can do that.”

So she had her surgery on a Friday morning. We had a huge crowd of people at the hospital and as soon as the doctor made the initial incision and removed the plug where he was going to go in and take this lesion out, the pressure released and they stuck a grid in there to check the EEG and it had basically corrected itself already. At that point, he already knew he was on the right track and he was going to have success. He just had to decide what area of margin to leave, what was okay to take, what really needed to go and what did he want to leave behind?

That was a Friday morning. Sunday morning, we were home. She was jumping on the bed. We have pictures of her after two days, two days after surgery, and you can't even tell she's had brain surgery.

Her hair was barely touched. This doctor used a process where he kind of lifts the hair off and does the work underneath. And then when he's done he kind of puts the drapes back down over the window and you don't even know that he's been there. So, the photos of her jumping on the bed two days after surgery, people are looking at us and saying, “She didn't have brain surgery.” I mean, there's no way that she's behaving like this and looking like this. I think she was swimming 10 days after surgery, and horseback riding 2 weeks after and back to ice skating 3 weeks after. And other than some of the educational issues that we had, that might not have been from the surgery that might have been the damage that the seizures had done for the 4 years that we weren't getting them treated properly. So we did have to figure out the educational piece, which was a major, a major obstacle for us for the rest of her educational time, the rest of her schooling but health wise, she bounced back amazingly and has never had a seizure since the moment that they opened up, you know, her skull to start the surgery. Seizure free. We just passed the 15-year mark.

[00:17:05] Nancy Volkers: And how old how old was Sophie when she had surgery, Brad? 

[00:17:09] Brad Levy: She was 9. 

[00:17:17] Nancy Volkers: So you mentioned something about giving back. I thought maybe this would be a good place to talk about what you decided to do. 

[00:17:27] Brad Levy: 

This is, this is not my nature. Believe me, this is not something I planned on. I didn't study for it. Wasn't prepared for it at all. I've just, I was raised with, you know, if someone does something nice for you, you got to do something twice as nice back, and that's what I try to do.

The surgeon, we had a little dinner with him about a year after the surgery, and he said, “Are you guys happy with the results?” And obviously the answer was yes. And he said, “Then how about doing something to give back to the epilepsy community? Let's start a patient awareness event and try to unite these people and get everybody, you know, a little hope and a little happiness in their lives because not everybody is going to get seizure control and be able to have epilepsy surgery and get on the best path. So let's do something for them.”

And for the most part, like I said, it was an accident. We didn't really plan for this to happen, but I came across a patient who has a son with epilepsy and she was an executive at Disney, at Disneyland and I said, “Is there any way we could have a community awareness event at Disneyland?” And she kind of giggled and said, “Oh, wouldn't that be fun?” And that was the end of that conversation until four or five days went by and I got a call from some vice president of sales at the Disneyland Resort who said, “Oh, Jennifer said I'm supposed to help you start an event.”

So we kind of threw some ideas together and raised a little money from a few sponsors so that we could buy a bunch of nice purple t-shirts and give them out to everybody for free. We put some Facebook posts out and did some invitations through our local support group, and we ended up with 875 people at Disneyland that first year, including Christina and her family. And they have been at every event every year for 12 years, or this will be their 12th year in November. 

[00:19:37] Christina Rezek: I googled. I wanted to give my friends education on epilepsy. And when I googled, I found the event. I bought tickets and the rest is history. We go every year. We make it a vacation.

[00:19:54] Brad Levy: We've got hundreds of photos of you guys on the website from the last 12 years. And it's pretty amazing because we can click into any year and you guys are there celebrating Lissa every way that you can and see you guys interacting with people. You're always so quick to help and talk to people and tell your story and get engaged and it's been amazing. We are lucky to have you guys.

[00:20:25] Christina Rezek: Thank you. 

[00:20:26] Nancy Volkers: I know you said the first event was 875 people, which is pretty big. So what are you up to now? 

[00:20:32] Brad Levy: And that was the day at Disneyland. We didn't really have anything else to offer. Towards the end of the day of that first event, a nice lady approached me, she kind of swarmed on me at the end of the day on one of the rides and she was there in her purple shirt and her Minnie Mouse ears and she came up and said, “Hey, are you the organizer?”

I said I am. And she said, “This is amazing. You did such a great job of getting all these people together, but you understand there's no takeaway. And tomorrow they're going to be at home with epilepsy. And all they're going to have is this memory of a fun day at Disneyland.” 

So that took me from, you know, high in the sky to down on the ground scratching my head saying, “Wait, what did I do wrong here?”

And then before I could figure out what just happened, she introduced herself and said, “Hi, I'm Dr. Deborah Holder. I just moved to Southern California. I'm an epileptologist. I'm an advocate. I'm a Disney geek. And I'm going to help you build an educational expo.” 

And that was it. The next year we took a little room in the basement of one of the hotels and I think we had three doctors give talks, including Dr. Holder. We had maybe 1,000 people show up and a few sponsors and booths. And then skip ahead to last year, we had 5,300 guests at the Disneyland Convention Center with 32 epilepsy centers, 150 doctors, 80 presentations, seizure dogs all over the place. And people are, we're making an impact. People are getting help every day.

Now, for this event, one of our main three focuses is to make sure that people are educated enough and know that if they're not getting seizure control on one or two meds, they need to push for a surgical evaluation. Surgery has really evolved. There are a lot more treatment options now.

It's not as definitive as it was before, where they had to find something exact to work on before they would go and attempt that work. Now, there are other options where they can go in and it doesn't have to be black and white. There are some gray areas and they have ability to work on that. Not everybody's going to be a surgical candidate, but everybody needs to have an evaluation because if you are a candidate, it's a life changer.

That's how you get off meds or on less meds. It's how you get total seizure control and then move forward with your life. So, you know, where in some medical conditions, surgery is your last option. It's not your last option in epilepsy. It's your best option, often. And if you can get seizure control there, in my opinion, it's worth the risk most of the time.

So we try to help people circumvent that long and windy road that we were on and try to get to the answers as quick as possible.

[00:23:35] Christina Rezek: I would do it again, even with all the outcomes that Lissa has had. The knowledge that there was hope - I would do it again. I would definitely recommend it to anyone that has drop seizures and is a candidate for surgery. That was the surgery that worked for Lissa. I mean, she still has seizures, but those drop seizures were scary.

[00:24:05] Nancy Volkers: Does either of you have other thoughts, advice, anything you want to say to parents of children with epilepsy, to epileptologists, to any listeners about epilepsy surgery and your perspective on it? 

[00:24:27] Christina Rezek: We had no history of seizures, and all of a sudden, life changed in an instant, and epilepsy should not be a scary diagnosis. There is a lot of research, there's a lot of knowledge and it's just a matter of getting that knowledge and being an advocate for your family or yourself. And fighting. As we say in our house, not one more seizure. That is what we fight for every single day.

[00:25:07] Nancy Volkers: Brad, anything you want to add?

[00:25:10] Brad Levy: Well, this is an educational piece, not really a promotional piece, but I do have to throw it in. If you have a patient in your family who is not getting seizure control and you have not had a surgical evaluation, you need to come to Epilepsy Awareness Day at Disneyland to the Expo. It's totally free. You just need to get yourself into that building. You are going to meet some of the top surgeons in the country, their support staff, all the epileptologists that work in those surgical programs. There will be doctors willing to listen to you. There will be doctors wanting to help you. And there will be doctors that are going to get you the education that you don't have yet.

And we'll, we'll get you information that you may not have gotten from your local doctor, you know, in your hometown. We like to think that it's a fun event, but I'm not there for the fun. I'm there to try to help people get connected. We have had amazing, amazing results, especially in the last few years where patients are showing up to the expo relatively hopeless. They've tried what they think is everything. Seven, eight, 10, 12 meds failed, no seizure control, and nobody's even talked to them about surgery. They sit in on a talk with a world-class epilepsy surgeon, and something clicks. 

If you come to the expo and find us, we will introduce you to doctors who are caring and willing to listen. They will help. They will explain things about how you travel for a second opinion, how you can move your care to a hospital, even if it's not near home. If you're willing to travel, there are doctors willing to help.

You've just got to go out and find the heroes. And we try to bring all those heroes to the expo. So if you have not had a surgical evaluation, you need to be at the Disneyland Expo. 

[00:27:43] Christina Rezek: I second that. Absolutely. And you also meet other families who know what you're going through. You just have to be an advocate, you know, for your own family member and you'll find over time that you learn things that you didn't even know you needed to know. Finding events like Epilepsy Awareness Day are invaluable, the knowledge that I've gained at those events. And the friendships.