by Ann Marie Gillie
When it came to curing my epilepsy, it turned out that surgery and a positive attitude was the answer!
It was December 3, 2002, three weeks before my 33rd birthday. I was determined that this would become an anniversary that my family and I could celebrate in the years to come. Our boys – Mathew, then 8 and Cameron, 4 – were at their grandparents’ house. My husband Richard had taken time off to be with me in the hospital and at home after the surgery.
I was about to have a small portion of my brain removed in order to try and put a stop to the epileptic seizures I’d experienced for most of my life. So Richard and I got into the car at six that morning and drove through the snow to the University of Alberta Hospital in Edmonton, Alberta. I could tell Richard was nervous, but he still tried to put me at ease. I didn’t need to be put at ease. I was so excited and actually looking forward to this crazy surgery I was about to undergo.
“Are you ready for this?” Richard asked me.
I’d never been so ready. I wasn’t scared at all
I think I even raised an eyebrow or two at the hospital. I guess brain surgery patients aren’t usually so thrilled or excited to be prepped for such a surgery. But I wanted to put an end to the seizures which were a constant worry. Just two days before my surgery I was cooking dinner when I got an aura. I started to feel sort of detached, spacey. I reached out and fumbled for the switch to turn off the stove burner. I made it to the living room, sinking to the couch before the seizure started.
My seizures, both petit mal and grand mal, all started with auras that lasted about half a minute. (The seizures themselves were generally less than two minutes.) The auras were warning signs that saved me from hurting myself or someone else, either through falling or dropping something. I could get into a safe position, either onto a bed or floor, the floor being the safest spot. If I was with someone, I could warn them. But the auras couldn’t tell me if the seizure was going to be a short petit mal or an aggressive grand mal. Sorry I still use the old terms when it comes to seizures … old school I suppose.
The seizure I had that day turned out to be a grand mal. Three-quarters of an hour later, I was back to making dinner, feeling sore and tired. As I stirred the spaghetti sauce, I wondered if I’d just had my last seizure.
People with epilepsy can live normal lives. It creates obstacles, but you can work around them, especially with the support of family and friends. Epilepsy is a brain condition characterized by recurrent seizures. Approximately 10% of Canadians will experience at least one seizure in their lifetime, but about 1 in 100 have epilepsy.
In 400 BC, the Greek physician Hippocrates wrote the first description of epilepsy and considered it a physical disorder. But people still thought epilepsy was a curse, demonic possession or some kind of prophetic power. It’s described in the bible and once was considered the mark of a witch. In the early 1900s the first epilepsy specialists emerged and two independent teams of chemists created Phenobartial, which is the oldest epilepsy medicine in clinical use (it’s the first medication I ever took for my seizures). In 1929, German psychiatrist Hans Berger devised a way to record the electric currents generated by the brain and render them graphically into a series of peaks and valleys. This test is the EEG (electroencephalograph), of which I’ve had several.
There are several types of seizures and a variety of reasons behind them. The EEG allows doctors to see what a seizure looks like on paper. I know what they’re like from inside. My husband Richard tells me that when I was in the grip of a petit mal seizure, I nodded my head, made noises with my lips and sometimes rambled, but mostly just made noise without forming sentences. I don’t remember these details. Most of the time I wouldn’t fall, and I remained half aware of what went on around me, but I couldn’t respond to people.
If I felt a seizure coming on while I was at work, I’d sit down and grab the phone, hoping it would be a petit mal and nobody would notice. Once, I was in line at the grocery store and I felt an aura. Fortunately it turned into a petit mal. The cashier kept talking to me but I couldn’t understand, or answer.
I just kept “searching” for something in my bag, unable to stop until the seizure eased a minute later.
The grand mals were far more intense. They would cause me to convulse, shaking. My eyes would roll back and I would have to be watched so that I didn’t hurt myself on anything around me. The grand mals were exhausting. It would take me a half an hour to get back into what I’d been doing.
There are different treatments for epilepsy, from medications to natural therapy. There always seemed to be drawbacks to my meds: weight gain, loss of sex drive or irritability. For most of my life, medication was my only treatment. I was investigating a naturopathic treatment when I switched doctors and heard about a new surgery. If I was an eligible candidate, it meant I could be medication- and seizure-free.
I was two when my first seizure happened. I don’t remember it, but my mom says she was in the kitchen making dinner and my dad was reading the newspaper. My brother Mike, then four years old, ran into the kitchen telling them that I was acting funny in my bed. I’d been sick with a fever and my mom found me shaking; my colour was off and my breathing very shallow. My parents were horrified and immediately rushed me to the hospital. I was prescribed Phenobarb several times a day.
My seizures slowed and finally stopped when I was about nine years old. I was taken off meds and was free of epilepsy – inexplicably and happily – for 10 full years.
In the summer of 1990 I went on holidays to Vancouver Island. We were visiting a friend’s house in Campbell River when my mom looked over at me and noticed that I was acting funny – staring, muttering and not answering questions. She knew it was a petite mal.
Nobody can say why my seizures stayed away so long, or why they returned, but I was absolutely devastated. Just months before, I had started seeing Richard, I was dreading how this would affect our relationship. I felt embarrassed and worried that at my age, seizures would interfere with everything: my social life, love life – you name it. But Richard took it in stride. He took me to most of my doctor’s appointments. He had to, because I lost my driver’s license that summer. I was 20 and miserable.. But we managed to continue living a pretty normal life. I made some adjustments on how far away I worked and how I got there, and I always took my pills. Gradually the seizures lessened and my dosages lowered.
A few years down the road the seizures crept up on me again. Richard and I were married and our first son was born in December, 1994. Doctors told me to keep up with the meds and I was seizure-free during my entire pregnancy. I worried about the effect of the meds on the baby, but Mathew was born healthy with all his fingers and toes. Not long after he was born, the seizures started again. I was a new mom, but stubborn as ever. I didn’t want to be told to be careful with my baby, but I knew I had to be. I changed Mathew on the bed or the floor, rather than a change table. I always sat on the floor with him or on furniture in the carpeted living room. I never took him for walks or bathed him (or myself) if I was alone. We had a pretty good routine going.
Our son Cameron was born in November 1998, and again my pregnancy was seizure free. But after Cameron was born, the grand mals seemed to increase. My medications were increased to seven pills a day of both Tegretol and Topamax, which I hated because of their side effects. But I had two children at home and needed to control the seizures.
Then, in 2002, I decided to change doctors for a fresh approach. My family doctor, Dr. Jeff Moss, who I also worked with and was an amazing support for me, referred me to a new neurologist, in Edmonton, Alberta. Than this new neurologist of mine referred me to the University of Alberta Hospital to see another new doctor, who he than told me there were new surgical treatments available for some types of epilepsy. That referral changed my life forever.
I was sent for a complex set of tests, called EEG Video Telemetry Monitoring, to see if they could pinpoint where in my brain the seizures were coming from. They attached about 30 wires to my head. (It wasn’t a nice look.) I spent the next eight days in a small room while they recorded my brain patterns. I watched enough DVDs on my laptop to last a lifetime. And I had enough seizures for the neurologists to see where they were coming from.
They told me I had focal ictal onset in the left temporal region. A small region of my brain had been damaged during the high fever I had when I was two. The seizures originated there, making me a candidate for a “left selective amygdalohippocampectomy” to remove the damaged tissue.
I was so excited. My husband and I went to see the neurosurgeon, who seemed relaxed and confident about the procedure. He really put us at ease. “It’s like he was talking about removing a hangnail,” Richard joked after we’d left. The eight-hour surgery went off without a hitch and I don’t remember much about the following day.
Later, they took the bandages off, and it looked even worse than the wires. I had 50 staples in my half-shaved head, but amazingly, nothing hurt. It was nothing a bandana couldn’t cover.
My recovery was like my hair – it grew slowly, in stages. For a few days after the surgery I really had to work at walking; it was like I was learning over again. I had a therapist, and we would walk as far as the nurse’s desk before we went back to my room. My best friend since we were 6 yrs old, Jillian, who lived in Florida, called me several times. Her calls were good for me, because I had to walk to the phone by the nurses’ desk. I also had to work on my memory skills. Various Capital Health therapists worked with me on my memory and general motor skills for more than a year. But it’s been 11 1/2 years
since the surgery and I am 100% back to where I was before, if not better. I am finding that I do need to manage my days differently than before; even though my memory is back, I still need reminders. My calendar is full of “to dos” like work hours and appointments, but I am told that comes with age :c)
After the surgery, I fell into a depression that I didn’t expect, even though I was warned that it was a common effect of neurosurgery. It was like being on a roller coaster and not knowing if it was going to stop. Some days were normal, but there were dark, stressful days as well.
Gradually, my depression improved. I also started to write poetry shortly after my surgery. It was a new experience for me and was kind of therapeutic, I think.
Even through my seizures and after the surgery, I have always remained very active in my community, which helped me through the healing process. I live in Spruce Grove, Alberta. I’m a teacher’s assistant with Parkland County Schools. A few months after the surgery, I also started an epilepsy support group in Spruce Grove.
In 2005 I joined the Edmonton Epilepsy Association as a volunteer on one of their boards and I had the goal of becoming a director. I am happy to say that in 2005 I became a member of the Board of Directors, partly thanks to the patience of Daphne Quigley, a nurse for Capital Health who let me bombard her with questions about the EEA and supported me before and after my surgery. Presently I hold the position as Vice President for the EEA and couldnt be prouder.
I am also a very active motivational speaker, and to me helping others seems to be the best reward ever. I have spoken in places like Phoenix, Arizona – Calgary, Alberta – Toronto, Ontario and Edmonton, Alberta. My goal is to speak internationally and spread Epilepsy Awareness around the world. I started an Epilepsy Support Group on Facebook several years ago to and I love the interaction of those on there, its very rewarding.
Since my surgery and the long recovery, I have not had a single seizure or taken any meds. I feel like a new person – in fact, so much so that 8 yrs ago Richard and I decided to add to our family and 7 years ago we had our 3rd son Nathan.
My life was challenging before surgery, but now it’s a new life, new beginnings, I always say lets start checking off my bucket list items because if I can beat the odds of neuro surgery and be 100% seizure free and off all meds, than I can do ANYTHING!