Carol Stream woman goes from battling aneurysm to helping others
The ticking time bomb in Roopa Desai's head made her fear for her life at even the slightest hint of pain. For six months, the Carol Stream resident, then 25, lived with a brain aneurysm behind her left eye, knowing that it could burst at any moment.
If she bumped her head or felt discomfort, she wondered if death would soon follow.
Worse yet, Desai developed another life-threatening condition, a pulmonary embolism — a blood clot in the lungs — which required treatment that could make the aneurysm more susceptible to bursting or slowly hemorrhaging. In short, trying to fix one condition could adversely affect the other.
Desai wondered how these problems could have afflicted a seemingly healthy person — and at the most inopportune time. They struck within two weeks of her marriage to Luv Desai, “the man of my dreams.”
“I had those feelings of, ‘Why me? I try to be a good person,'” Desai said. “I thought, ‘Is someone out to get me?'”
But from her despair came hope. After six months of treatment for the embolism, her aneurysm was surgically repaired. She recalls knowing very little about either condition when she was first told of them. But today, only 18 months after her surgery, Desai leads a support group for people diagnosed with an aneurysm and their caregivers. The group meets 6 to 7:30 p.m. every third Monday of the month at Central DuPage Hospital in the Women and Children's Conference Room.
Her body of knowledge on the affliction is far larger than when she received a phone call at 4:45 p.m. Friday, July 25, 2009.
Initial shock
It all started with some very mild headaches. But they persisted for weeks. Then a month. Pain medication did not help. At first, Desai, a first-grade teacher at Field Elementary School in Elmhurst, thought the headaches were the stress accompanying her fast-approaching wedding.
A visit to the doctor did not help. An MRI came out OK.
However, she insisted that the feeling in her head was not “normal.” After further tests and just two weeks before her wedding, Desai, now 28, found out the bad news: she had a medium-sized brain aneurysm behind her left eye.
But finding out the answer to her pain did nothing but create more questions.
“I thought, ‘What is it? Can it be cured? Will I have it forever? Am I going to die from this or is this something they can fix?'” she said. “It was a lot of unknowns. A lot of fear.”
As her mind raced and that fear gripped her, she had to make a decision quickly: Would she risk her life in order to marry? Or would she undergo surgery immediately knowing that a lengthy hospital stay would likely force her to delay her marriage. One doctor told her that going through with the marriage would be like playing Russian roulette with her life.
“I had a lot of sleepless nights,” she said. “I figured if I stay awake, I won't die.”
In the end, she and her husband chose to delay surgery until after the wedding. As part of her Hindu tradition, she would start the four days of wedding events and try to avoid stress and strenuous activity.
If it meant having to skip the dance floor on her big day, so be it. She was going to marry Luv, whom she had dated for 11 years, and then have surgery to treat the medium-sized aneurysm.
But as she celebrated the first day's event, the henna party, she received even more bad news.
Bad timing
As she celebrated the start of her wedding week and had accepted her decision to delay surgery on her aneurysm, she received a phone call from her doctor with a new problem. It was a pulmonary embolism, which can be deadly if severe enough.
The timing could not have been worse. Guests already were in town. In fact, many were at her house, dressed in formal attire, when she told them of her latest complication.
It was four days before her Aug. 8, 2009, wedding. She looked at friends and family members lining the street, grim looks on their faces.
“It almost looked like a funeral,” she said.
This time, though, Desai's doctors stepped in. They chose to treat the embolism. That took six months, leaving her to worry about whether the aneurysm would rupture in the meantime.
At the age of 2, Desai lost part of her vision in her right eye in an accident. One of the complications of the aneurysm surgery was that she could temporarily lose some vision in her left eye, her “good” eye.
So when the 35-minute surgery left her with partial vision, she worried that it might be permanent.
The surgery took place March 15, 2010. Doctors inserted a stent at the neck of the aneurysm. They then guided a platinum coil from Desai's leg through her body. Once it reaches the aneurysm, the insertion coils itself up and fills the area of the aneurysm. Coiling is one of the most common treatments for brain aneurysms.
However, the predicted side effect came true: She did sustain some loss of vision. The good news was it proved to be temporary.
After her ordeal ended, she was struck by how little she knew about her aneurysm and all that it could entail. So she said she decided to help others.
Group therapy
As a schoolteacher, Desai always has been data-driven. So when she was faced with two conditions she knew nothing about, she nearly panicked.
But instead of isolating herself, she wondered how other people who faced the same obstacles felt.
After asking a few nurses and reaching out to the Brain Aneurysm Foundation, Desai discovered there were no support groups in the area. She decided to change that.
But the transition was not easy. She thought talking about it made it appear as if she were seeking sympathy.
“It was really hard being that person,” she said. “At first, it was really hard to talk about it. But then I felt if I wanted to make change happen, I was going to have to be comfortable talking about it.
As she looks back at her ordeal, she said her strategy has changed from feeling sorry for herself to instead feeling that she dodged a potentially fatal condition.
“I had to take that approach,” she said. “I am going to look at how lucky I am to survive this.”