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Brain aneurysms inflict York Region family twice
(Reprinted from Yorkregion.com)
Jul 22, 2004
John Slykhuis, Staff Writer
Suzanne Thompson of Keswick is on a personal crusade to inform people about brain aneurysms, a condition that causes a blood vessel in the brain to expand and possibly explode.
The result is often instant death or permanent disability.
The frightening thing is they form unnoticed and only scanning technology such as an MRI or CT can detect them, Ms Thompson said. "And there is a long wait to have access to one."
Such a scan would have prevented her father, Robert Lefler of Queensville, from being struck with an aneurysm in 1998 at 59.
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"My dad had a headache and what felt like the flu for several days. When I took him to the doctor -- he was unable to drive because of the pain and nausea -- the doctor told him to go home and take some aspirin."
Aneurysms are often mis-diagnosed.
He wasn't feeling any better 10 days later and they made another appointment. He never made it.
After what he described as "the worst headache of my life", the aneurysm in his brain ruptured, requiring emergency surgery with little hope of survival.
While he survived, he suffered major complications and now needs constant care.
"He has no short term memory at all, which affects every aspect of daily living," Ms Thompson said. Her mother, Aldene, 63, is his sole caregiver, an enormously stressful and tiring task. Mr. Lefler is currently in hospital.
Then Ms Thompson's sister, Debbie Bernard, suffered a cerebral aneurysm rupture while vacationing with friends at a cottage Aug. 23, 2002. Too far from hospital to be saved, she died.
"My sister was dead at the age of 43. How could this happen? We were in total shock," Ms Thompson said.
It turned out her father's sister had also had one 20 years before, leading her to the inescapable conclusion their family's condition was inherited.
She first broached the possibility with her father's attending physician in 1998. "He chuckled and replied we were grasping at straws. It was just an unfortunate fluke. We left it at that."
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Suzanne Thompson of Keswick has started a brain aneurysm support group in northern York Region.
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Until her sister died. Then there was no doubt.
Further research revealed a total of six family members had been struck.
Ms Thompson read everything available about brain aneurysms and was alarmed at what she learned.
"Approximately 2 million people in the U.S. have unruptured aneurysms. Of those that rupture, 50 per cent will die." Most of those who live require institutional care for the rest of their lives.
"I want to warn people that if there is a history in their family, they need to get tested. I have three remaining siblings and we have all been tested and are clean for now. We will continued to be tested every three to five years."
The likelihood this is an inherited condition in her family keeps her and her husband, Bill, constantly vigilant for their children, a daughter, eight, and son, five. The slightest headache sounds the alarm.
"It's terrifying," she said. "I watch the kids like a hawk."
An aneurysm detected before it ruptures can often be treated successfully with microsurgery. The most common surgery is placing a titanium clip on the affected area.
In other cases, aneurysms can be fixed with a minuscule catheter.
Ms Thompson is now spearheading the cause locally starting a support group for northern York Region, hosting a symposium in Newmarket last spring and participating in the Arterial Challenge Walk for Awareness in Boston last May.
The American programs to deal with aneurysms are far more advanced than in Canada, Ms Thompson said.
"When it happened to my dad, we were totally lost. We have nothing here in Canada." That's something she has vowed to change.
"My efforts to spread awareness are not going to help my dad or my sister, but hopefully with education and awareness, lives can be saved and families spared this tragedy and devastation," she said.
For more information about participating in the support group, or to learn more about brain aneursyms, Suzanne Thompson can be reached by e-mail: suzanne180@sympatico.ca
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