Her Debilitating Headache Was a Total Mystery—Until a CT Scan Picked Up Something Strange
"The doctors showed my mom the image, which is supposed to be all dark, except there was a white spot about the size of a quarter," Victoria says. "They told her I had bleeding in my brain."
What’s Wrong With Me?
The patient: Victoria, 26, a social-work student at the University of California, Berkeley
The symptoms: Severe headache and nausea
The doctor: Dr. Steven Hetts, chief of interventional neuroradiology at the UCSF Medical Center at Mission Bay in San Francisco
Victoria grew up having headaches but always attributed them to motion sickness (if she was in a car), lack of food (if she had skipped a meal) or high stress. Based on that history, she wasn’t surprised when, during her second day of undergraduate studies in August 2010, her head began to pound.
This headache, however, was unlike any she’d had before; the pain was of the “thunderclap” variety and, shortly after it first came on, the room started spinning. Victoria stumbled across campus, concentrating on putting one foot in front of the other. “I was sweating and swaying and I was worried people would think I was drunk,” she says.
Finally, she sat down on a curb and threw up. When she got home, she told her family that she was going to take a nap, which had been her strategy for dealing with headaches in the past. She then descended into a dreamlike fog and wouldn’t clearly remember anything after that until three weeks later.
Initially, Victoria stayed in bed at home for three days, and her headaches persisted. Her parents thought she had the flu. She was conscious, but her activity was limited to sleeping, eating toast and answering yes-or-no questions. On the third night, her mother insisted that she go to the hospital and dragged her to the car against her will.
In the ER at San Francisco General, nurses gave Victoria pain medication and kept her for observation. Her mother asked several doctors for a diagnosis and insisted that her daughter’s headache wasn’t normal. When her pain didn’t improve, she was sent for a CT scan. “The doctors showed my mom the image, which is supposed to be all dark, except there was a white spot about the size of a quarter,” Victoria says. “They told her I had bleeding in my brain.”
Victoria was rushed to the ICU, and Dr. Steven Hetts was called in. The imaging revealed that the bleeding wasn’t on the surface of her brain, as would occur with a common aneurism, but was deeper, which made Hetts suspect an arteriovenous malformation (AVM)—a knot of abnormal blood vessels that disrupts the flow of blood in the brain.
“We don’t know what causes AVMs or what makes them bleed,” Hetts says. “And symptoms, if there are any, can come out of the blue.” It’s a rare condition, affecting about one per cent of the population. Headaches are the most common sign, although some patients have seizures or difficulty speaking. More than half of people with AVMs will have an intracranial hemorrhage, which can lead to brain damage or, sometimes, death.
Find out the three most common types of headaches—and how to relieve them.
An angiogram identified the location of the bleed. Hetts decided that the best option was to insert a catheter as close to the ruptured artery as possible and seal it with a substance chemically identical to Krazy Glue. “Once the liquid ‘glue’ mixes with the ions in the blood, it seals off the vessel and prevents it from rupturing again,” says Hetts.
Following the surgery, Victoria remained in the ICU for two weeks. The bleed had damaged surrounding brain tissue, and it took three months of physiotherapy for her to recover the use of her left arm and leg. She struggled with both her long and short-term memory for three years. “I just had to be patient with myself and write everything down,” she says. Victoria returns for yearly checkups.
“I’m very grateful,” she says. “In support groups, I’ve met people with family members who didn’t make it to the ER, or people with AVMs who never fully regained all their senses or mobility.”
Victoria is working on her master’s degree and plans to become a medical social worker. “My experience has given me more empathy,” she says. “I understand people with invisible illnesses, and I want to help them.”
Next, read the terrifying story of the Toronto man whose mysterious headache lasted 12 years.