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Marissa's Story: Overcoming Epilepsy

Friday, May 04, 2018 2:36 AM

At age 12, Marissa Brown already had big dreams, but found herself dealing with daily seizures due to epilepsy. For years, medication was not working, so Marissa turned to the team at the NorthShore Neurological Institute for innovative new solutions.

You were diagnosed with epilepsy at 12; how did it affect your life?
Epilepsy started to begin to affect my life in a way that I can't explain, and in a way that I can only start to explain now because I'm starting to deal with my epilepsy and I'm no longer really in denial about it. At age 12, it really affected my confidence. It was really hard because I didn't know anybody else who had epilepsy, anybody else who had seizures. A lot of the other kids didn't know what epilepsy was until I was diagnosed with it, so the chances of the other kids, knowing what it was were very few. I was really good at academics and then all of a sudden my grades started slipping and the medication started interfering with my moods, my emotions, my attention and organization.

That time was very happy when the diagnosis first came out. It was after a lot of researching and kind of digging to try to find what that was when I was experiencing these seizures. They weren't grand mal seizures, so I wasn't always unconscious and they were smaller, so sometimes in classes, teachers wouldn't notice, friends wouldn't notice. It would just be small things that I wouldn't notice, but at the time I didn't know that they were seizures. I would remember taking notes in class with a pen on my notebook and all of a sudden my hand would jerk and I would drop my pen off my desk and I would have scribbles on my paper, and for the longest time, I thought that was normal or just a nervous twitch. It turns out that those were petite mal seizures. So it all kind of culminated into this weird 12th, 13th year. I'm just starting to find myself and just trying to fit in a little bit, and that just made me feel like I was the black sheep out of everybody. 

I went through a lot of different medications. No one in my family had had an epilepsy and so we really didn't know where to start or what kind of medicines to go on. It was all kind of luck of the draw. I went through a lot of different medications, a lot of different dosages. A lot of them were affecting my creativity, how was doing in school, my emotions. Eventually we landed on Depakote which is one of the last medicines that a neurologists would give their patients. It actually started working more than the other medicines that I was taking, but I was still having breakthrough seizures and I was still having grand mal seizures multiple times a year. 

How did you get introduced to VNS, and what made you decide it was the right choice for you?
I was about 22, and that's when Dr. Narayanan brought VNS to me. I had a previous neurologist who recommended the same thing, but when I was 17 or 18, and I wasn't ready to hear that. In my mind, epilepsy was something that I could still get rid of at that point, and maybe there was a magic pill that I thought that there was or that the medicine would control it all, but in my case, that wasn’t what was happening, so when Dr. Narayanan recommended the VNS to even out everything, with the potential of tapering me off my medication.

Dr. Narayanan thought I would be the perfect candidates for it. We had been trying to combat my breakthrough seizures with medicine for 7 to 8 years before I had really considered VNS. She thought I’d be a good candidates since the seizures were not stopping; not only was I on Depakote, but I was on another medication too. We couldn’t push my dosage any further, so she pushed me to think about the procedure. The combination of the VNS and the medicine could hopefully knock the seizures out all in one, and that was very exciting to me combined with the thought that I might eventually be able to taper off my meds (twice a day by then), which were one of the hardest things to deal with for me. The possibility of being by myself without dependency of that was something that I was very excited about.

When you found out about the VNS procedure, what were your thoughts?
The first time the VNS procedure was brought to me, I was 17 or 18 years old, and I just thought it was too extreme for me. I thought I didn't need it, and that epilepsy was something I could beat, so I was given the pamphlet, and I just looked over it and I disregarded it. The second time ti was brought to me, I was about 22 years old, and more years had passed, seizures had happened, and nothing was really getting better. I was running out of options and Dr. Narayanan thought I would be a perfect candidate, and she brought it to my attention and really encouraged me to think about it and read more into it. I did and just loved the idea of having more control and eventually tapering off my medications.

Can you tell us a bit about VNS and why it seemed right for you?
Vagus nerve stimulation comes from a device called a Vagus Nerve Stimulator. A neurosurgeon makes a quick incision on your chest and also on your neck, usually in the crease where others can’t tell it exists. They put the implant into the little pocket made in the chest and connect the wires up through behind the neck. It sends currents to my brain (every minute for 30 seconds); my stimulator will turn on and send currents to my brain to offset the electricity storms that are happening, so I avoid having seizures.

You can choose to turn it on which is something I very much loved when my doctor started talking to me about this surgery because it offers a sense of control in a world where I've never had control. That's something that I feel like a lot of people feel with epilepsy is a lack of control, because you never know when a seizure is going to happen, which can be terrifying.
What I love about the VNS is that you get magnets, so each magnet, if you ever feel like you're gonna have a seizure or like you're having an aura, you can wave it on your implant, it'll kickstart your implant to start working and that will lessen the time of seizures or prevent the seizure from happening, lessen the side effects, which, if you've ever had a seizure before, sometimes the side effects are the worst part, and it just gives you that sense of control more than anything; you can go throughout the day, if you need, it can have it by you.

What was the surgery and recovery process like?
Dr. Chowdhry was my operating surgeon; he did a great job. The surgeon was only about two hours. I went in, they did the quick incision, and came out, and I was okay. I was really sore for about two weeks; it's hard because the incision sites are on your neck and chest, so for those 2, 3 weeks, I was laying around at home. It was important to me that I had a good support system at home because I couldn't do things like cook or showering for a bit, so it was important to have a good system at home. After that, everything just healed by itself. The scars are still healing, but after that, it was pretty easy. I don't really have too many side effects other than when the device turns on, sometimes you can feel a little vibration in the back of your throat or like a hoarseness in the voice, and people can hear when it turns on because my voice becomes lower or hoarser. Dealing with that little difference is nothing compared to the benefits of the procedure and very happy I did it and am excited for the rest of my life.

What has it been like since you had the procedure done?
I've had the VNS implant for about a year and a half now. At first it was hard, because you're going through the healing process of the surgery. It wasn't too long, but after that, you have to go in for follow up visits once a month, so that took awhile to kind of work the current up to where it might be best suited for me and could really benefit my daily life. Those visits happened for about six to eight months after that.

Ever since I've gotten it, I've felt better because I've got a sense of control. Not only that, but my seizures have gone down. Not completely diminished, but they've seriously gone down in numbers. I suffered one grand mal since I've had the VNS implant, which to me is very successful because I was suffering them at least once a month and having petite mal breakthroughs when I was waking up or going to sleep, so not having to see those happen on a daily basis is something remarkable for me, and it just lessens the fear that I was living in before.

We haven't gotten to the point where we can taper me off my medication, I'm still very much on it in combination with the VNS, but that's okay for me for right now because I do think we need more time to work through the kinks, but I am excited for the moment when I do get to taper off my medication. It's very hard for women with epilepsy because a lot of the medications can be harmful or damaging if you ever want to have a child. So the idea that if I ever want to make that decision, that I have the VNS to protect me when I try to taper off my medications is reassuring and hopeful because before, at 15 16 years old, that I'd never be able to have a baby because of the medications I was on for epilepsy, and for being so young to hear that, was very difficult. The VNS brings hope to the fact that there are other options out there was just amazing.

Ever since I got the VNS procedure, I've become more confident in myself and how I am. Epilepsy is a part of me, but doesn't own me, and now that I've come to realize that, I feel like I can advocate a lot more. Last year was my first year running with the Epilepsy Foundation in their yearly 5k. It felt amazing to be with a bunch of supporters. It was raining but we were walking running...it was wonderful. I'm signed up to do it again and have some people on my team, so I love fundraising for that, using that to advocate and get the word out about epilepsy. I also just recently started a blog called Seize the Good Life; it's basically about making everyday yours. I think something that's really important to remember in epilepsy is that you really have to think day to day, what can you do to make each day seizure free and as smooth as possible. The site focuses on epilepsy and advocates through my perspective, different things I've had to deal with and I'm sure other epileptics have had to deal with. I write about different topics I think people might relate to and answer questions about epilepsy. Things people might not think are related to epilepsy and how it all ties in.

What are some of your goals as you move forward in your recovery?
I have a lot of goals I feel like as an individual. I'm always trying to better myself and grow. I'd like to be independent and feel independent. A part of epilepsy is that I feel like a burden for other people; I can't drive, so if I need to go to the pharmacy, grocery shopping or the gym, it's a big hassle for me financially or on someone else's time in my head, so my goal is just to be independent. I would like one day to drive; that's a goal that I have. I got certified to teach English as a foreign language. I love teaching, I'd love to be a teacher/administrator in the future, and I love to travel. I have plans to travel to different countries and teach English and hopefully spread love through language. That's something I really believe in and I hope to get the ball rolling once I get epilepsy under my belt and take control of it.

I feel like when I was diagnosed, I was put in a situation where I was advocating for people with epilepsy all the time because I was explaining to everybody what epilepsy was, what you do when you see someone have a seizure, statistics on epilepsy and seizures. I was telling everyone from family to friends, anyone who was asking questions, so I feel like I was advocating right off the bat. Nobody else is going to advocate for you, you have to do that for yourself. That was a big thing for me to learn because for a long time, I was in denial about the fact that I've had epilepsy, so now the fact that I've accepted it and can advocate for it is good through say if i need time from work if I'm having a bad seizure day, at school, asking for extra test time or whatever it may be, it started with that, and it rolled into me wanting to reach out to other people who have epilepsy who feel like me or felt like me. When I was diagnosed, I was in fifth grade. I was 12 years old, and had no idea what was going on. and I had nobody who was a successful epileptic to look up to and say "wow they did it, they made it through, this is how they do that" and that affected my confidence, so I want to be there for other people who are going through the same thing and get the word out and get awareness out about the cause and de-stigmatize everything that goes into epilepsy and let people know that epilepsy is more than seizures; there's a lot of emotions that go into it as well, and a lot of branches that come from it. Some people can't drive, some can't swim, have light sensitivity, can't go to concerts, so it's important for to tell those things.

What would you say to those who have recently been diagnosed with epilepsy and/or are unsure about what to do?
To people starting out on their epilepsy journey, I just want to let you know that it will not always be easy. A lot of times it'll be very hard, but you can get through it, and there are other people going through it and will connect with you. You'll learn how to cope with it and deal with it. For me, it took ten years for this to even be kind of under control. I just want to encourage people to have patience and try your best to take care of yourself, your sleep, your medications; it will benefit you in the end.
To those starting their epilepsy journey, it may be intimidating. There's a lot that goes into it; EEGs, blood tests. Stick with it, trust in your neurologist. Give them all the information that you have, keep a log of everything that you have, and open communication with your neurologist. They're trying to help you and get you seizure free, so it's important that they have all the information that they can to help you.