On May 20th I had a cavernoma (a benign cluster of malformed veins) removed from my left temporal lobe. That is the part of your brain that controls language, communication and memory, amongst other things.
The cavernoma had been triggering seizures, and it was time to come out. I had been experiencing seizures, migraines and auras (symptoms that are almost a seizure, but not quite… these can be experiences like seeing something, smelling something, hearing something or just having an abnormal sensation) for TEN YEARS before I could get the help I needed.
I’ve learned a lot in the process, so I thought I’d share some of my insights about having epilepsy, and pre and post surgical experiences.
However, this was a bit of a long road, so I have decided to split it into two parts: Part 1: Leading up to the surgery (it was a hell-of-a-long path) and Part 2: 6 months after brain surgery.
WELCOME TO PART ONE!
But first, I had to have brain surgery because of my epilepsy. Let’s learn some basics about the neurological disorder:
So what did I learn?
Always trust yourself!
It took 2 general practitioners, 1 blood specialist, 1 hormone specialist, 7 neurologists and 2 neurosurgeons to properly diagnose and treat my epilepsy.
THAT’S A LOT OF DOCTORS.
Those doctors are obviously educated people, but you know what? No matter how much they have trained, they don’t know your body and mind like you do. If you think “something is wrong, I don’t feel good” you’ll know that a hell of a lot better than someone who’s never met you or experienced what you have experienced.
Trusting yourself when you have a seizure disorder can be pretty counter-intuitive; if your body and brain are constantly doing things you can’t control, one of the hardest things to do is trust yourself. I found it all to be pretty damaging to my confidence, but one thing I stuck to was knowing that something was not right.
When I was 15 I started having weird neurological problems. In hindsight I think they started as migraines, and sometimes auras. For me, this was being blinded from seeing spots (like how you can’t see when someone has taken a picture of you with flash), along with not being able to feel my body correctly. For example, I couldn’t feel my fingers any more. I would be very, very nauseated and unable to think clearly. I wouldn’t actually get a headache until a few hours after experiencing this. When the headache came I was overjoyed, because I knew that soon I would vomit and the feeling would subside. Gross, right?
When I tried to get this resolved, no doctor thought of my head. They thought I had a low blood pressure (people in my family have a low blood pressure disorder) and that I was simply having fainting spells.
TMI time, but when I was 20 my menstrual cycle simply stopped. I checked many times if I was pregnant and I wasn’t. When I went to a hormone and blood specialist, I was told that I probably had an eating disorder (which I didn’t, I’m just kind of small). I was also told that my hormones seemed fine, and that there wasn’t a reason otherwise.
When I was 22 I was finishing my undergraduate degree and was studying Japanese and German as elective courses. I usually have an aptitude for languages, but suddenly I had these strange [near] fainting spells where I was overcome with exhaustion and heart racing simultaneously and I would need to sit down. As I recovered from the sensation, I had trouble speaking or remembering anything. I went from being a language expert to having no memory of what I was learning— I would literally need to relearn everything before a test and then write it quickly before I forgot what I’d learned the next day.
Again, no suggestions from doctors. All I knew was that it was becoming more and more frequent, going from once a month to three times a week.
Shortly after graduating I woke up in the hospital with a splitting headache and a swollen tongue. Last thing I remembered I was having dinner with my family.
The nurse told me I had had a seizure. I almost laughed at how ridiculous that sounded. Only weirdo’s have seizures, right?
But, that’s what happened.
Doctors had finally taken scans of my brain when I was brought into the emergency.When they looked at the results they diagnosed me with brain cancer.
At that point I was pretty stoned from drugs and the rush of dopamine that floods your brain after tonic-clonic seizures (these are the ones you see on TV where you collapse to the floor and shake).
It was probably the best possible time to be told you have cancer, but obviously my family was devastated.
However, a second look at a more detailed scan revealed that it wasn’t cancer, it was a thing called a ‘cavernoma’ a cluster of malformed veins. It was benign, and had likely been there since I was born.
The cavernoma was located in my left temporal lobe— the part of your brain in charge of language and memory. This explained why I was having such trouble communicating and with memory. Additionally, it was situated near my pituitary gland, the gland which controls your hormones. As soon as I started taking medication, my menstrual cycle started again.
Long story short: I WASN’T CRAZY!!
You will lose people
Adversity acts like a sieve in your social life; when times get rough, a lot of people you could never imagine hurting you walk out of your life. But you know what? Fuck ’em. At the same time they walk away, a lot of amazing people also reveal themselves to you— and some of them are completely unexpected.
For me, many close friends— including my best friend of over 10 years— decided the stress of dealing with my illness was too overbearing. I’m gonna be honest, I was probably a bit of a basket case, but I was adjusting to new medications ( they are NOT easy to get used to) as well as dealing with the trauma that comes with knowing you have a brain disorder. Seizures affect you mentally and physically, and on top of that the plans I had spent years developing and prepping for now had to be cancelled because of the need to balance out my life. I was absolutely devastated.
Other people just don’t know how to handle the swift differences you face. I lost my driver’s license, but I also was advised not to drink. So, I was the sober friend at parties but still couldn’t be the designated driver.
I was literally told by my previous friend that she didn’t want to go to parties with me because she didn’t want to “babysit me.” I was so hurt by that comment that I felt like I had been slapped— I couldn’t think of anything to say.
From then on I was too scared from that comment to ever admit to her that I was having a seizure, even though they happened often. One time we were in a conversation and I spaced out from a seizure. I found her staring at me and I tried to recoup by asking her a question regarding something I remembered her saying. She got so annoyed with me because, I guess, she had just answered that question. She told me I never listened to her, and stopped speaking to me.
So, when people you could always lean on walk out on you, you are winded from that unexpected damage.
It will happen. I promise. Some people just don’t know how to handle it.
Other people also step forward and show how amazing of a friend they can be. These varied from people down the street wishing you the best, to people living far away sending care packages. People I barely spoke to suddenly came forward with an infinite amount of support and encouragement. This included my neighbour that I hardly spoke to, and a girl who I went to high school with but never really hung out with; suddenly they became pillars of kindness in my life, and showed me that kindness can come in the most unexpected of places.
Be extremely persistent
Having a neurological disorder is a tricky beast to wrestle with. For me, my seizures were not physical except for the one tonic-clonic seizure. The rest were mental seizures that, even with medication, came to me as a sudden confusion in communication. I wouldn’t be able to understand people, let alone feel like I was producing something comprehensive. So, I usually just nodded and smiled unless it lasted long enough that I would be able to sputter out that I needed a minute.
My symptoms started to become worse and more frequent. At one point I couldn’t understand my own thoughts, and then I would start projecting my non-sensical thoughts onto others; I would literally “see” them saying those thoughts. I wouldn’t remember what they said a moment later, but it made me feel like a psycho.
The first time I was unable to understand my own thoughts I was so terrified that I checked myself into a hospital. I waited many hours to simply be told that since I was already diagnosed as an epileptic nothing could be done. I might have to wait 8 months for an MRI but really, they said, it was just stress from my grad program.
I had one neurologist that I started seeing in Ottawa— he was well regarded but had the bedside manner of an old wolverine prowling for money. Without listening at all to me (he literally asked me why I was in his office, clearly not reading my charts that sat neatly on his desk), he then tried to prescribe me a new medication which I reminded him I was allergic to. I was very annoyed because I had waited 8 months to see him. He then tried to get me to take valium, and I lost it telling him I didn’t need a calmer, I needed help. I stopped seeing him.
If I hadn’t already dealt with so many jaded doctors I might have taken his advice and tried to be calm about it. But even in my calmest moments I felt my seizures becoming worse and worse. I was going to school in Ottawa, but I called my neurologist in Victoria, B.C.— he was the only one who took my feelings seriously, a true gem of a man. I told him I was coming to B.C. for reading break (my boyfriend was still in B.C.) and if I could get an appointment. For some miraculous reason, he gave me an appointment after his office closed.
When I spoke to him he told me that my symptoms were pretty strange and got me an MRI WITHIN TWO DAYS. The MRI didn’t show anything too interesting, but still he got me a place in one of Canada’s top neurological hospitals, located in Montreal, to stay for up to two weeks for monitoring.
So, for the first couple weeks of my final year in my grad program, I stayed hooked up to electrodes in the Montreal Neurological Institute so that my brain activity could be monitored. If I felt a seizure come on I would push a button and the nurses would check on me, check how much I understood, and then later the EKG monitors would be able to look at the time I had pushed the button and assess my brain waves.
The purpose of all of this was to make sure that my seizures were, in fact, coming from my cavernoma. Cavernomas are actually more common than you might think, and many have no symptoms, so it was a safety check to see if my seizures weren’t actually coming from a different part of my brain.
Luckily, the cavernoma was the source, and so the hospital decided to conduct some more tests over the next few months to make sure I was a surgery candidate.
In the meantime they referred me to another neurologist in Ottawa. He was also very highly regarded, but when I finally got an appointment he called me in and walked about with no shoes on, without introducing himself, and again, without listening to me. After about 20 minutes of me having to repeat myself and be battered with condescending questions and comments, I stormed out.
Most neurologists, no matter how educated they are, have never experienced a seizure themselves, so I can understand that gap in empathy, but if they treat you like you’re nuts I really can’t stand it.
After many more tests ( I will detail them in a different post) the neurologists discovered that my cavernoma had been bleeding, and damaging surrounding brain tissue. This was why my seizures were getting worse, and would only continue to get worse as it bled more. If I left the cavernoma in, there was a small chance it could start bleeding heavily and cause a stroke. It was also located in a spot that was not close to very important control centres in my brain, so it would probably be very safe, as far as brain surgery goes, to remove it. I was warned that I may need some speech rehabilitation if things didn’t go perfectly, but without much of a choice I opted for surgery.
Oh yeah: I WASN’T CRAZY—AGAIN!
Talk to people in the same boat!
As you may have gauged, it’s pretty difficult to go through the mental and physical aspects of epilepsy. For example, after my seizures I would often be overcome with emotion and just burst into tears for no reason. I would feel absolutely crazy. Additionally, as a student in a journalism program, my struggle with communications was overwhelmingly frustrating and something I didn’t want to admit to most of my classmates.
Sometimes, too, I would get so frustrated from other people’s complaints. One time I went to a baby shower of a family friend, and the mother-to-be complained to me with such sorrow that sometimes she felt nauseous. I can understand that frustration, but I was staring at her just quietly thinking “at least you don’t have to have brain surgery in two weeks.”
However, I was blessed to have met three amazing people the first time I stayed at the MNI. They were all men of different ages that were experiencing their own seizures, and were hooked up to the electrodes like I was. While they were in a different room, I would be able to reach their room while still being hooked up to the monitoring machine, and in the evening we would all sit around and talk and feel a weight lifted off of our shoulders as we finally discovered we weren’t alone! Even though we had very different causes (one had a brain tumour, one had a scar in his brain, and one had severe seizures for an unknown reason), we all had similar thoughts and feelings, and it was so powerful to be able to talk about it. We called our nightly talks our “therapy sessions.” We still talk fairly often, and they even attended my wedding!
You are so much stronger than you think you are
If you need to go through brain surgery, or even if you are just dealing with troubles of your own (health-related or otherwise) that only you can see and feel, you are a strong mother fucker.
Think about it: if you break your leg, you get a cast and crutches. People see that, they know to open doors for you and they know that you are strong because, hey, your leg hurts a lot but you’re out and about doing things.
If you have something going on internally it’s way more difficult; people can’t see what’s happening. And oh boy, if it’s in your head and affecting you so that you are acting any way abnormal, the stigma around mental health makes it so much harder for you to A) talk about it and B) for other people to tolerate it.
I have found myself talking about my experiences a lot, and while it’s probably annoying for some people I think it’s really important to talk about it and make it more “normal” or at least better understood.
In any case, just know that even when you feel so inadequate, weak, stupid, sad, angry or confused, you are still walking about doing things— you are your own rock and that is a rare miracle. And you know what? You’re not alone!! Remember even if you feel like a freak, you are one of many who can talk to you.
That’s my summarization for now!! I’m really excited to do my post-surgical piece because there are many stories to tell. In the mean time, if you have any questions or comments, I’d be happy to help!