A sudden vertigo attack in May 2010 left Claire Snyman with an excruciating headache — the worst she’d ever experienced. Afraid and in pain, she immediately sought medical attention. As she awaited the results of her CT scan, Claire heard the whispers of doctors outside her hospital room, assuming their words — ‘rare’ and ‘brain tumour’ — were unrelated to her case. To her shock, she was wrong. 34-year-old Claire had a brain tumour, and her life was about to change because of it.
Thankfully, Claire’s tumour — a medium-sized colloid cyst, a slow-growing non-malignant tumour typically found near the centre of the brain — was not cause for immediate concern. While colloid cysts can be extremely serious once they reach a certain size, with the potential of increasing pressure in the brain, at the time of Claire’s diagnosis hers was small enough that it did not require immediate surgery. Instead, her ER physician recommended a ‘watch and wait’ approach, with regular MRIs to ensure it wasn’t growing, and medication to help with the headaches and vertigo.
Claire, reluctant to undergo immediate brain surgery if it wasn’t completely necessary, accepted the diagnosis. That said, the treatment protocol wasn’t easy for her. “The psychological challenge of watch and wait is hard to navigate, especially when you’ve got something inside your head that shouldn’t be there.”
To fully understand her state of mind during this waiting period, it’s important to understand Claire’s personality. A skilled product and marketing manager, her career was spent carefully assessing difficult situations, collecting data, and developing strategies to come out ahead. Claire’s diligence and attention to detail allowed her professional career to flourish. Little did she know at the time that these traits would eventually save her life.
“Once the shock of having a brain tumour wore off, I realized that I needed to start taking more initiative in what was going on if I wanted to feel in control,” Claire says. When her neurosurgeon casually asked if she wanted a copy of her CT scan report, she thought: sure, why not? “I took it home and I read it and learned so much. That for me was the first moment I realized I needed to keep a copy of every single thing that happened to me.”
For the next two years, Claire underwent regular MRIs to ensure her tumour wasn’t growing, collecting each and every medical record in a red binder that would eventually become nearly too heavy to carry from appointment to appointment.
“For me, having access to my health records was integral to my patient journey, and key to my outcome.”
“I call it ‘The story of my brain’ within that binder,” Claire laughs. “It’s hard for anybody to remember all of the details, and that’s especially true for someone such as myself who was having challenges with memory at that stage. That’s why it’s so important for all people to have access to their health records. For me, having access to my health records was integral to my patient journey, and key to my outcome.”
Claire’s decision to be an engaged patient led her to catch several mistakes that could have been disastrous. For example, her neurologist told her she would require brain scans every year, yet he wrote in her clinical notes, “one brain scan next year,” with no reference to every year. Claire was the one who flagged the mistake. One year later, it was time for another brain scan. Her neurologist happily told her that her scans were stable, and she didn’t require any further MRIs. A second opinion confirmed Claire’s suspicion that this wasn’t the case — the standard of care stated she did in fact still need consistent brain scans every year.
In 2012, two years after her initial diagnosis, Claire experienced a bad vertigo attack. She was referred to an on-call neurologist, who dismissed her symptoms as an inner ear infection, and sent her home with no medication, no follow-up appointment, and no brain scan.
When her dizziness escalated to a migraine unlike any she’d experienced before, Claire’s family doctor referred her to the ER for a CT scan. She feared Claire’s tumour had grown, and that cerebrospinal fluid had begun to accumulate, leading to a dangerous condition called hydrocephalus.
To Claire’s dismay, she was dismissed at the ER. They called the neurologist she’d just seen, who said that she didn’t need a CT scan, and should be sent home after being given intravenous pain medication.
“I knew in my heart of hearts this was not a usual headache,” Claire remembers. “I knew something was not right.”
At this stage, Claire’s brain was beginning to shut down. Her memory grew spotty, and her legs felt weak.
“I knew in my heart of hearts this was not a usual headache.”
Claire’s husband, who had been taking care of their 6-year-old son at the time, was horrified she’d been sent home from the ER, and insisted on getting a second opinion. Their second opinion recommended an urgent MRI, but after calling her local health care centre, Claire learned that unless they went to the ER again, there would be a nine-month wait. Afraid of being turned away once again, she turned to a private MRI clinic. A thousand dollars later, she had her answer. Her family doctor was right — fluid was building up in Claire’s brain, and she was beginning to experience the symptoms of hydrocephalus.
“The results showed my tumour had doubled in size.”
From there, things moved quickly. Five days later, Claire had surgery to remove the tumour and relieve the pressure on her brain, and was in the ICU for a week. Soon after, she was back in the hospital for a couple of days with aseptic meningitis.
The entire ordeal left Claire unable to regain a sense of normalcy for a full 18 months post-op. “Your brain takes its own time to get back to normal. I’ve fractured my hip before, and in that case I had my operation and was back to work within weeks. This was completely different.” Claire explains. “I was sleeping for 18 hours a day. But once I got over the fact that my brain was going to tell me when it was ready to get back to life, it became easier to handle.”
And yet, she struggled — with exhaustion, anger, depression, and even Post-Traumatic Stress Disorder. “So I started journaling,” Claire says. “I told my psychologist how therapeutic I found it, and she said I should consider making it into a book one day, that it could potentially help other people. So, I did.”
Claire documented all of the tactics she used when she was diagnosed — from tracking her records and reading the latest medical research, to noting a list of questions prior to every appointment, so she didn’t forget anything. Through this process of tracking, educating herself, asking questions, and managing her health records, which she would eventually dub the T.E.A.M. approach, Claire learned she had the ability to inspire and empower patients to do what she did, and to take their healthcare into their own hands.
“My passion now is finding ways to activate patients and care partners,” Claire says. “This journey has taught me so much about “breathing in the small things” and at the same time being your own advocate. To this day, six years post-surgery, I am so respectful of my body and brain.”
This story is part of Dot Health’s #HealthStories series, where we highlight individuals from across Canada and their experience with the healthcare in Canada as a patient, provider, or advocate.
Dot Health is a Toronto-based digital health company that believes health information belongs in the hands of its owner: you. Through our mobile app, we empower Canadians to own and control their health data, from clinics, hospitals, labs, and pharmacies.