Overcoming the challenges of epilepsy
Karen Fisher knew she was in the exact right place at the exact right time in her life the moment she began her tour through the epilepsy unit at London Health Sciences Centre (LHSC). In her heart she felt this was the place she was meant to get to and the team she was meant to find.
Fisher’s 30 year journey to get there had not been easy, but her fierce determination to never give up on herself carried her through all of life’s trials and tribulations, making her new beginning all the more sweet.
When Fisher was a kindergarten student her teacher began to notice things that didn’t seem quite right, like how she would sometimes appear to zone out and wander off. After expressing concern to Fisher’s mother, it was determined that Fisher’s actions were the result of complex partial seizures and she was diagnosed with epilepsy. The next seven years would prove to be a challenging time for the vibrant little girl.
“I really struggled through my school years,” recalls Fisher. “Just the fear of having a seizure was enough to keep me from wanting to do even the most regular day-to-day tasks. I started to hold myself back from things I would’ve loved to do.”
At around 12-years-old, Fisher’s seizures stopped. She was taken off the medication she had been taking to control them and, despite her worries they would return, she spent the next six years seizure-free.
“I was 18 and preparing to head off to university when I suddenly had a seizure,” says Fisher. “It was a devastating time for me. Not only had my fears of the seizures returning been realized, but I also lost my driver’s license, which you can imagine was a prime source of independence at that age.”
Still, Fisher pushed herself to move forward. With a strong drive to never quit, she resumed anti-seizure medication and went on to school as planned, spending the next few years engrossed in her schoolwork. She not only successfully attained her Certified General Accountant (CGA) designation, but was also able to get her driver’s license back.
“I’m very much a believer that when you put your mind to something, you can do it,” says Fisher. “Making it through my post-secondary education was something that was important to me and I wasn’t going to allow epilepsy to sideline my opportunity to do that.”
The great feelings of accomplishment would soon give way to disappointment as her seizures once again began to return more routinely. It seemed her medication was no longer working.
The next few years were a very trying time for Fisher as medication after medication failed to work and her seizures began running out of control. Her condition was then categorized as intractable epilepsy – meaning medications were unable to successfully control her seizures. It was at this point her local neurologist suggested that her one hope might be brain surgery. To Fisher, this was a surprise as she had never heard of a surgical option to treat epilepsy before – she immediately began to research options that were available in Canada and shortly thereafter made the trip from Ottawa to visit LHSC’s University Hospital for an initial consultation and tour of the epilepsy unit.
“I’ll never forget how the visit was just so far above and beyond any of my expectations,” says Fisher. “Everyone, whether they were meeting with me or just walking by in the hall, was incredibly friendly and supportive. It really felt like they worked as a cohesive team and I instantly had no hesitation about moving forward.”
Fisher was then booked to return to the hospital for inpatient testing and electroencephalogram (EEG) monitoring in January 2008 under the care of LHSC neurologist Dr. Jorge Burneo. The testing and monitoring would confirm specifically where the seizures were originating in her brain and would also determine whether or not she would be a candidate for the surgery. Following these tests, Fisher returned to Ottawa and her work, eagerly awaiting the results.
In March of 2008 Fisher returned to LHSC and met with LHSC neurosurgeon Dr. David Steven. He gave her the news that she was a candidate for brain surgery and explained what it would entail. The wait, if she wanted to move forward, would likely be six months to a year.
“It might sound strange, but within just a few minutes of meeting Dr. Steven I knew I trusted him,” says Fisher. “So despite all of the worries and hesitations that naturally come with having a major surgery, I felt comfortable moving forward and put myself on the wait list.”
On Monday, June 23, 2008, Fisher received the call that she had been anticipating. She was told that the surgery could be done that very Friday; otherwise she may have to wait nearly a year for another opening.
“A lot of my family and friends thought I was crazy for making the decision to undergo brain surgery in the first place, let alone accept a last minute call for it,” recalls Fisher. “But inside I knew this was my only chance to have a regular life. I had 100 per cent confidence in the medical team and trusted that they would do what they needed to do.”
On June 27, 2008 her life changed forever. She went through surgery where Dr. Steven successfully performed a left temporal lobectomy. She awoke to what she hoped would be a new reality – one that would be free of seizures.
She had been told that the surgery would have a 60-80 per cent chance of reducing her seizures. Five years later, Fisher remains seizure-free.
“Typically a patient must be free from seizures for over a year for a surgery to be considered successful,” says Dr. Steven. “By that measure we were definitely successful with her surgery; but there are many other factors that make Karen’s a true success story, especially her steady determination to propel herself forward no matter what.”
That strong will has been essential for Fisher as the years since the surgery have not been as easy as she had hoped. Returning to her daily life would take over three years and a lot of personal effort. The part of her brain that had been removed was also part of the centre that helps to regulate emotion and, following the surgery, she went into a clinical depression.
Recognizing the signs of depression during follow-up care, Dr. Steven referred Fisher to LHSC psychologist, Dr. Paul Derry. With Dr. Derry’s help and the support of family and friends, she would spend the next two years working through her depression and would ultimately come out of it a stronger, more positive person who had a brand new outlook on her life.
“Dr. Burneo, Dr. Steven, Dr. Derry and the entire team at LHSC not only saved my life, they changed my life,” says Fisher. “I lived so many years in fear, never knowing when a seizure could happen and while I still have to sometimes remind myself to quiet those fears, I’m living a much fuller life.”
Today Fisher runs her own business as a Certified General Accountant and has become a vocal advocate for epilepsy awareness in her region. She has also written an autobiography entitled “My Life Time Roller Coaster Ride With Epilepsy”, with proceeds going to LHSC’s epilepsy program as well as her local epilepsy support agency.
“I am fortunate that I can now look ahead to living the rest of my life in a positive way. If my story can give one person hope, then I owe it to them and to myself to help. I’m living proof that you can overcome stigmas, fears and depression.”