Teen battles back after brain surgery
The waiting room in Children's Hospital in Lawrenceville was full, but silent.
Becki Crivelli and other family members awaited word about her daughter, Alie, 17, following five hours of delicate brain surgery.
A mass caused by an abnormal connection between arteries and veins, called an arteriovenous malformation — AVM — had ruptured in Alie's brain, causing bleeding and spinal fluid to accumulate.
Doctors didn't give the family much hope.
“They told me to call everyone,” said Crivelli. “I just couldn't do it.”
In the operating room, Dr. Stephanie Greene cut open Alie's skull to remove the AVM and implant a temporary shunt to drain fluid.
If she had waited one more day to go to the hospital, she likely would not have survived, her mother was told.
Greene said Alie's bleeding occurred in the cerebellum, a portion of the brain that controls balance, motor skills and emotions.
That was 16 months ago. Alie, now 18, of Bell Acres, has since traveled a journey that would have been long, arduous and uncommon for anyone — let alone a teenager — her doctor said.
But she is alive. With the help of intensive therapy and the support of the Quaker Valley School District community, she has returned mostly to being a typical teenager.
Alie, who has dimples when she smiles, jokingly refers to herself as a “senior citizen trapped in the body of an 18-year-old.” Some of her long-term memory is gone, and she still has some trouble using her right hand — both side effects of her first stroke. She now relies on her left to paint, to pursue the art she is passionate about.
Greene said AVMs are very rare.
“(They are found in) around one in every 300,000 kids,” she said, adding that they are typically congenital, and can bleed at any time. She said the risk of a hemorrhage increases about 2 to 4 percent each year.
Many people don't have symptoms until after an AVM has already bled, though Alie recalls having an odd buzzing noise in her ear.
“I never knew the symptoms. What 17-year-old needs to know that?” she said.
In retrospect, she and her mother think a change in Alie's outlook may have been an indicator that something was wrong.
As a Quaker Valley sophomore, Alie had become serious about artwork. She created bright, colorful works, mostly with nature theme, with knives, oils and pastels.
But when she was a junior, she became fixated on skulls and brains. The change came a short while before Alie's first stroke.
“We thought it was weird,” said Becki Crivelli. “What she was doing, it was so morbid.”
Alie said she doesn't know why she was drawn to the human body. She just liked it, she said.
But Crivelli thinks it may have been a premonition.
Felt like a migraine
May 30, 2011 began as a typical day. Alie awakened at her Bell Acres home, planning to get ready to meet friends to watch the Memorial Day parade in Sewickley.
But as she stepped in the shower that morning, her head began to hurt. She figured it was a migraine, so she laid down.
She refused to go to the hospital, even though the headache was severe. She described it as the worst pain of her life.
When it hadn't abated by the next morning and she began vomiting, she agreed to go to Heritage Valley Sewickley hospital.
She was about to be discharged with medicine for migraines when she began having difficulty walking, talking and seeing.
Alie can recall staggering into the ambulance to go to Children's before blacking out. She remembers arriving at the hospital and being told she would have surgery.
She didn't realize the severity of her condition until she watched as her mother and sister cut the jewelry from her body. She was being prepped for the operating room.
Alie began to cry.
She remained at the hospital for two weeks, attending a prom for patients, although she was too ill to stay long.
She had to recuperate at home — she called it “house arrest” — for six weeks. Then she began physical and occupational therapy, three hours per day, twice weekly, for about four months.
She finally recovered enough to return to Quaker Valley High School for the start of her senior year, though she admitted it was a challenge.
She said she found it difficult to take notes and keep up with the class.
Teachers began providing notes, which made it easier.
“I feel like I can't thank people enough,” Alie said, expressing gratitude for the understanding of Quaker Valley staff and support from friends, neighbors and family, including her father, Domenic, and four siblings: Lucia, 26; Ariana, 23; Sabrina, 20; and Domenic Jr., 16.
In October, Alie had a procedure to treat an aneurysm in her brain, discovered during her AVM surgery. Doctors couldn't perform both procedures together.
Four days later, despite taking blood thinners, she had a small ischemic stroke because of blood clotting. This stroke primarily affected her speech.
She began a second round of therapy in February, which now included speech intervention, with a neurotherapist at UPMC Passavant in Cranberry, completing it June 1 before attending prom and graduating with her class.
The district has offered her an internship to help teach art to elementary students.
Though painting became a challenge, her middle school art teacher and mentor, Jeff Evancho, encouraged her to not to give up.
She will take a year off before going to college in hopes of studying art and occupational therapy — a decision influenced by her strokes and the care she received.
“I just want to help people,” she said.
Today, Alie's long, brown, wavy hair covers the faded scar on back of her head. While she exhibits few outward signs of her health problems, she remains wary.
She says she has put on music when she showers, to drown out the memory of the day her brain bled.
She attends the Western Pennsylvania Chapter of the Brain Aneurysm and AVM Support Group at UPMC Presbyterian.
Greene said although AVMs can re-grow in some cases, she doesn't feel Alie is at great risk. Still, she will have to undergo yearly testing for five years to be sure.
The aneurysm presents a higher risk of recurrence. Greene said Alie must be tested for that for the rest of her life. She is scheduled for another angiogram — she's already had five — in March.
Alie said she has been trying to become an advocate for aneurysm awareness, and she recently provided the Quaker Valley/Valley Ambulance Authority with a DVD from the Brain Aneurysm Foundation to use as a learning tool.
“The community played such an important role in her recovery,” Becki Crivelli said.
“I don't even sometimes feel that this happened,” Alie said. “It's just so weird to think about.
“I live my life now as if I only have six hours to live.”
Kristina Serafini is a reporter for Trib Total Media. She can be reached at firstname.lastname@example.org.