Isabel White, 36, was in a spinning class when she got a headache so intense that she had to get off her bike and lie down on the floor. Jen Gulvik was 30 when she was having a massage and suddenly overcome with terrible, unspeakable neck pain. And three years ago, Shana Spiess, 35, woke up one morning and couldn’t swallow.
You may think that strokes only afflict those in their 50s and 60s and it’s true, nearly 75 percent of stroke patients are over 65. But these young women all suffered a rare kind of stroke caused by a vertebral artery dissection, or VAD. Artery dissections account for one-quarter of strokes in people under 45—a disproportionate number of which are women—and can be caused by the slightest of head trauma.
Because symptoms are so vague—headaches, dizziness, a tingling sensation—and affect a demographic not traditionally associated with strokes, many victims are not properly diagnosed.
A coughing fit, strenuous yoga, a trip to the chiropractor—even sex can cause a tiny tear in the layers of vertebral artery at the base of the skull, which can then lead to a blood clot.
Except for a brief flurry of attention when Sharon Stone suffered such a stroke in 2001, the stroke hasn’t received much attention in the press.
That is, until last month, when a patient advocacy group sued two Connecticut chiropractic trade groups, accusing them of violating patients’ right to know about the health risks of neck manipulations—which some say can be a cause of VADs. The lawsuit came three months after the Connecticut Board of Chiropractic Examiners voted to reject a proposal that would have required chiropractors to warn their patients about the risk of neck manipulations.
“When VAD leads to stroke in a young person, it’s so tragic and devastating,” Janet Levy, founder of the patients group, Victims of Chiropractic Abuse, Inc., wrote in an email. “No one knows the agony of it all. It takes years to recover… if one recovers at all.”
Levy recounts how she herself went to a chiropractor in 2002 to seek help with a stiff shoulder she had developed in her sleep. After seeing a chiropractor, however, she suffered a stroke. “I almost lost my life,” she said. “It took me two full years of seven-hour days of therapy, and lots of money to get better. It was grueling and devastating and depressing… I remember that I just kept wanting to die.”
Four years earlier, in Canada, another woman, 20-year-old Laurie Jean Mathiason died of a stroke after having her neck manipulated by a chiropractor, according to reports. “Unfortunately, Laurie Jean's case is not unique,” said Levy.
Defenders of the industry, however, point out that artery tears are uncommon. “One paper in the literature says that there are one vertebral artery dissections for every 20,000 neck manipulations—that’s not that many,” said Dr. Rafael Llinas, Associate Professor of Neurology at The Johns Hopkins Hospital.
And the strokes themselves are extremely rare, afflicting an estimated two people out of every 100,000. Fewer than 5 percent result in death.
While the alleged connection between neck adjustments and strokes has gotten most of the media attention lately, doctors say there are many other ways to tear the vertebral artery.
Five years ago, Chris Denny, 32, was at the gym lifting weights. “My neck felt funny. A big wave of pain went across my head,” Denny recalled. “I dropped the weight, and thought, ‘Ouch, that hurt a bunch,’ and went home for the day.”
He didn’t have a stroke for another two weeks (a stroke only occurs when blood either travels to the brain or interrupts blood flow to the brain), which is when he started to lose his voice, feeling in his right leg, and his sense of balance. “If I tried to walk, I would fall over. If I shut my eyes, I didn’t know if I was upside down or on my side.” To this day, Denny said, his right arm “feels a little frost-bitten.”
Denny later became an advocate on the issue, founding the website VertebralArteryDissection.com.
“It was really hard to find any kind of information about VADs five years ago,” Denny said. “I used to make websites at my agency for things like that, so I thought, ‘Well, OK, I’ll just put this up there and put anything I find out about it online.’ I was surprised when I started hearing from people pretty quickly. I’ve probably heard from 150 or 175 people over the years.”
And, yes, sex can also cause the stroke. “If you don’t find any obvious reasons, you sometimes find they can be caused by head and neck traumas from sexual activity,” said Dr. Llinas. “People—they play a little rough, they choke each other, heads twist.” Llinas, however, stressed that sex-related VADs are “not the majority.”
Whatever the cause, no one is more shocked than the patients themselves to hear what’s happened to them. “It’s really hard and scary when someone tells you you’ve had a stroke,” said White. “It’s hard to wrap your head around, because all of the preconceptions you have about strokes, you can’t even really apply to yourself.”
Because symptoms are so vague—headaches, dizziness, a tingling sensation—and affect a demographic not traditionally associated with strokes, many victims are not properly diagnosed. In nearly a dozen interviews conducted by The Daily Beast, VAD patients said that when they initially showed up at a hospital or doctor, they were sent home, told that they’d suffered everything from a panic attack to hyperventilation.
After Gulvik began getting blurry vision when she went running, in addition to the neck pain she felt after her massage, she went to a neurologist and was told she was having migraines.
“I had a hard time accepting that—that all of a sudden in my life, I get a migraine when I go running,” Gulvik said. “Four weeks later, I found out I’d had major strokes.”
And Spiess, a young mother who writes a blog called, “I Had a What?!?!?!: My Stroke Survival Story,” went to the emergency room after suffering severe head pain and being unable to swallow. An X-ray and a CT scan didn’t turn up anything and she was sent home, told that she had a panic attack.
It wasn’t until she returned 48 hours later with more severe symptoms, and was given a CT angiogram scan, that she was hospitalized and put on blood thinners.
“It’s a matter of how the patient presents their symptoms,” said Dr. Michael J. Schneck, Associate Professor of Neurology and Neurosurgery at Loyola University Medical Center. “A headache is so common—it could be a migraine; it could be an aneurysm or a brain tumor. VADs are hard to diagnose because the symptoms are non-specific. Twenty-eight-year-old Liza Gates—a contributor to The Daily Beast—woke up one morning last May after a bachelorette party and noticed that, “when I smiled, I couldn’t use the right side of my face.” She was luckier than most, though, in that she was—relatively speaking—quickly diagnosed. Although the first doctor she saw told her that she was suffering from a “complicated migraine” and came close to sending her home, a second doctor picked up on her symptoms and sent her immediately to the ICU. Still, she suffered from aphasia, finding it difficult to speak, read and write. Now, nearly three months after the stroke, Gates is at home resting and having her blood levels checked every week. “My mother was a genius, she got me the English Rosette Stone (language-learning software), and it was more powerful to me than speech pathology. I did it day and night, day and night,” she said. “I mimicked every speech pattern, doing it in more elaborate ways. Three months later, I’m talking. It’s complicated for me to say elaborate concepts or to say the right word, but I’m already doing so well.” (Doctors had told her that she wouldn’t talk for a year.) “It’s easier to write than read. I’m still struggling with reading. It feels very overwhelming to see all those words coming at me. But with writing, it’s reinforced my knowledge that I’m going to get through this.”
Nicole LaPorte is the senior West Coast reporter for The Daily Beast and the author of The Men Who Would Be King: An Almost Epic Tale of Moguls, Movies, and a Company Called DreamWorks.