By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
Marissa Olivarez didn’t understand what was causing the frequent headaches or the tingling and numbness in her left arm.
She’d been to doctors, she’d had tests done, but it wasn’t until she saw the neurology team at Riley Children’s Health last fall that she had a name for what was wrong with her.
Moyamoya disease is a rare, progressive cerebrovascular disorder caused by the progressive narrowing of arteries at the base of the brain. It literally means “puff of smoke” in Japanese, describing the tangled vessels that form to try to compensate for decreased blood supply to the brain.
“She was having what we call mini strokes or TIAs,” explained Dr. Rabia Qaiser, associate professor and researcher with IU School of Medicine and pediatric neurosurgeon at Riley.
TIAs are transient ischemic attacks that occur when blood supply to the brain is briefly interrupted. While TIAs typically last only a few minutes and patients recover quickly, they can be a warning sign that a person is at risk for a full stroke.
For Olivarez, putting a name to her condition was a relief, even if the disease itself was still a mystery.
“I had no idea what Moyamoya was,” said the 19-year-old, who lives in Warsaw with her parents and younger brother. “Dr. Qaiser explained everything and put my mind at ease.”
Not that it wasn’t scary.
“I just knew I had something wrong with my brain.”
The exact cause of Moyamoya is still being studied. There could be a genetic component, Dr. Qaiser said, but it is also sometimes associated with conditions such as Down syndrome and sickle cell disease.
In December, Olivarez checked into Riley to undergo surgery. It is a procedure that Dr. Qaiser has performed many times in which she harvests a blood vessel near the ear and places it on top of the brain.
“It actually puts roots into the brain and makes new blood vessels, and that supplements the blood supply,” the surgeon explained.
Dr. Qaiser’s return to Riley after completing her pediatric neurosurgery fellowship training here in 2015 is due to her interest in the cerebrovascular pediatric population and the opportunity to expand Riley’s reach beyond Indiana.
“That is my passion,” she said in an earlier interview, “to make this a center of excellence for pediatric cerebrovascular diseases, including Moyamoya disease, arteriovenous malformations, aneurysms, stroke or any vascular diseases that affect kids. We want them to come here.”
Even at 19, Olivarez felt like a little girl the night before her surgery.
“It was so scary,” she said. “I could not sleep. That first night, my parents stayed at the Ronald McDonald House, so I had to stay in the hospital by myself. There was so much running through my head, like what if that’s the last time I see my family?”
Riley nurses came to her rescue that night, calming her with coloring books and companionship.
“There are some amazing, amazing nurses at Riley, and doctors, especially Dr. Qaiser. She saved my life. She made me a better person.”
Olivarez, who is also under the care of Riley neurologist Dr. Derryl Miller, had just graduated from high school when she was diagnosed. At the time, she said, she felt like her world was collapsing.
“I felt so alone. I lost all motivation.”
The surgery changed all that. Her attitude shifted as well.
“I know God’s got my back. I already had open-heart surgery as a baby (for a congenital heart defect). I can get through this,” she told herself.
“Now, I’m doing more, I’m working, going to church, hanging out with my friends, exercising. Honestly, it was lifechanging,” she said.
“It opened my eyes to never taking things for granted. Before, I didn’t really see how lucky I was to have a supportive family and close friends. I see that now. Everybody in my life came to bat for me.”
She will continue to be followed by Dr. Qaiser, but for now she is back in the gym and is working full time at a hotel.
“I love going to the gym,” she said. “It’s a long recovery process, both physically and mentally, so every day, I have to push harder and harder. But it’s a second chance for me. It’s made me a better me.”
That zest for life is exactly why Dr. Qaiser does what she does.
“I think Marissa is an amazing person who is very determined and ready to get back to her life. She did it herself,” the surgeon said. “This is the best thing about working with young people.”
New Riley neurosurgeon found her calling at a young age - Dr. Rabia Qaiser has been interested in the intricacies of the brain since she was barely a teenager. At Riley, she will focus on pediatric cerebrovascular diseases.