“People who know they have loved ones who’ve been stricken in the past should, with the doctor’s guidance, get scanned with common methods like an MRI. I look at it like this: All aneurysms are treatable. But by not knowing, the decisions are taken away from you. You may very well be walking around with this time bomb. Then all of a sudden it pops and consider the devastation of that sudden death or the dramatic change in life.”
– TOM TINLIN
Now that many families are once again celebrating the holidays together in person, there’s an opportunity to swap stories, meet new arrivals, and share happy memories of those we’ve lost over the years.
It might seem morbid to some, but there’s a topic that should be raised with loved ones when the time is right. What is our family history of sudden deaths caused by aneurysms?
Tom Tinlin had no idea that his mother’s side of the family lost people to fatal ruptures that went undetected in his childhood years. So, when his own hidden “time bomb” exploded in April 2017, it came as a total shock.
Tinlin, who was the state’s highway commissioner at the time, is one of the fortunate ones. About half of people who suffer the same sort of hemorrhagic stroke that he experienced will die in the first 24 hours. Thirty percent will die instantly.
Tommy— as his friends call him— was lucky. The persistent, painful headache that had beset him for about a week was initially misdiagnosed. As he soldiered through his role as the emcee of a benefit for a South Boston charity, he stepped off stage and told his wife Heather that he needed to get to a hospital – and fast.
Heather made it happen, and she and the doctors who treated him at Beth Israel Deaconess Medical Center saved his life.
Tinlin spent nearly two weeks in the hospital and then had to retire from his demanding job in state government. But he wasn’t sidelined for long. Within a few months, he started a new job as an associate principal at Howard Stein Hudson, a Boston-based transportation consulting firm.
In his personal time, he has dedicated himself to raising awareness about the risks of brain aneurysm— and the urgent need to get more research done on how to save those in danger of strokes.
“I couldn’t just lie around like ‘woe is me,’” he said. “It makes me feel good to do something, so I decided to really get involved in fundraising with the Brain Aneurysm Foundation, which is the largest private funder of brain aneurysm research in the world.”
What he learned in the process are facts that everyone should know and keep in mind.
“The best science available for brain aneurysms tells us that one out of fifty people on the face of the planet have one. In fact, it’s one of the most prevalent diseases out there.”
And for those who suffer a hemorrhagic stroke – like the one that almost killed him – “the vast majority die.” That somber fact, Tom argues, is partly to blame for the relative lack of federal funding that gets devoted to research on bran aneurysms.
“It’s been very difficult to get the federal government’s attention on this at the NIH level, because most victims of the hemorrhagic event will die and can’t advocate for themselves,” he said. The other most common form of blood clot— an ischemic stroke— has a far higher rate of survival. Tinlin refers to those sorts of events as “Tedy Bruschi strokes,” a reference to the former New England Patriot who survived a serious rupture.
“The ischemic is more like a blood clot and can create havoc for sure, but most people are survivors. It sucks a lot of the funding away from the hemorrhagic research.”
Tinlin and his family, which includes his two children, Grace and Thomas, have thrown themselves into the cause of changing that dynamic. They’ve mounted an annual golf tournament that has grown by leaps and bounds.
The one this past September drew hundreds of golfers and required three different courses, in Braintree, Dorchester, and Hyde Park— to accommodate the demand. Over its four years, the Tinlin Family Golf Tournament has raised some $800,000.
“Last year we raised more than $235,000 and next year we hope to top out at a million. People have really rallied around me and the cause. Secretary Marty Walsh, Gov. Charlie Baker are there each year. And Mayor Wu came to the tourney this year and shared her personal story of someone she lost. The more you talk to people, everybody has a story.”
Tinlin is frequently called upon for advice and counsel to people who suddenly find themselves impacted by an aneurysm crisis, says Secretary Walsh.
“Watching him turn that fright for him and his family into the work he does has really been inspiring to see,” says Walsh. “Tommy helped so many people in his personal and professional life. It’s more common than you realize.”
Tinlin is also a fierce advocate for federal legislation that would require the National Institute of Health to spend $10 million a year over five years to study the cause and the treatment of brain aneurysms. The bill— known as Ellie’s Law— has been introduced several times without success. But Tinlin is determined to help get it through Congress and on the president’s desk in the new session.
“Among the brain aneurysm demographic, the majority- female and women of color demographics are the most at risk,” he says. “It’s not much of an exaggeration to talk about equity here. If I were the prevailing demographic, I would feel that if it was affecting members [of Congress] who look like me, the bill might have a better chance.”
If it becomes law, the funding requirement would have a sunset clause in five years, but Tinlin says that modest spending in the NIH budget “is what they need to make a difference.”
In the meantime, he is urging people of all backgrounds to become familiar with their own risk factors, particularly the family history, which he only learned about after his near-death experience.
“I had an aunt and uncle on my mother’s side who passed from aneurysms,” says Tinlin. “Researchers strongly believe that there is a family history.”
Tinlin says that people who know they have loved ones who’ve been stricken in the past should, with the doctor’s guidance, get scanned with common methods like an MRI.
“I look at it like this: All aneurysms are treatable. But by not knowing, the decisions are taken away from you. You may very well be walking around with this time bomb. Then all of a sudden it pops and consider the devastation of that sudden death or the dramatic change in life.”
On Nov. 1, Tinlin returned to the hospital for a procedure to deal with a second aneurysm in his brain that doctors found while treating his initial rupture in 2017. They had been monitoring it in the intervening years, but this summer his medical team decided it was time to intervene.
The minimally invasive angio procedure only required a single overnight stay, and Tinlin was back to work the next week.
“As people do get together for holidays, they should have these conversations,” he says. “When I was growing up, no one was connecting the dots. You still have folks who don’t know.”
For more information on how you can assist in the cause of preventing death from a brain aneurysm – or to support lobbying efforts for federally-funded research – visit bafound.org.