Lindsay Shvetzoff had reached her "last straw" when she arrived at the M Health Fairview University of Minnesota Medical Center.
She had been denied by doctors across the country in her search for treatment for Neurofibromatosis type 2 (NF2), a rare genetic condition that causes non-cancerous tumors to grow on nerves in the brain, spinal cord, and inner ear, which can lead to hearing loss and balance problems. But she finally found a partner in Dr. Christopher Moertel, professor of Pediatrics at the University of Minnesota Medical School.
“He must have seen how devastated and lost I looked,” Shvetzoff says. “But he approved the treatment for me, and so that's ultimately what brought me to him.”
Finding support she needed
The journey to that moment began a year earlier, after Shvetzoff was diagnosed by accident. During a night out with friends, she fell and hit her head, knocking her unconscious. In the emergency room, doctors noticed Shvetzoff’s uneven pupils, a sign that had been ignored for years.
“Before this, nobody seemed to raise any red flags or say that imaging should be done,” she says. “They just really chalked it up to, maybe I was born that way.”
Imaging revealed tumors in her brain and spine, leaving her in a “state of shock.” As the tumors grew, other doctors proposed a surgery that would leave her deaf and partially paralyze her face.
Through online NF2 support groups, Shvetzoff learned of a drug called Avastin that could help her avoid surgery, but accessing it was nearly impossible. Because the drug was not FDA-approved to treat NF2 and cost thousands of dollars per dose, she had trouble obtaining it. But Shvetzoff refused to accept that outcome.
“I kind of just said, ‘I'm gonna interview around the country and try and get on this, because before I go into brain surgery and become deaf, I am going to do everything I can to prevent that from happening.’”
That determination led her to Moertel, where the difference in care was immediate. He considered the quality of Shvetzoff’s life and worked to get her enrolled in a clinical trial that would allow her to receive the treatment she needed, and covered the cost of the medication.
Now, for 15 years, Moertel has been her advocate. “I have not once left his clinic feeling scared. I have never left feeling unheard. I always leave there with more hope than when I came in,” she says.
With his help, she is receiving the treatment that has given her back her life.
A miracle future
When surgery was unavoidable, the University of Minnesota Medical School and M Health Fairview were there. She notes, “My neurosurgeon, Dr. Andrew Venteicher (associate professor of neurosurgery), did a wonderful job.” She also highlights oculoplastic surgeon Dr. Andrew Harrison, a professor in the Department of Ophthalmology and Visual Neurosciences, calling him “another phenomenal doctor who I’ve been seeing for many years.”
This comprehensive care allowed for a life she didn't think possible.
“I was told I'd never have kids, because I was in premenopause when I was on Avastin,” she says.
But during a break in treatment, a miracle happened.
“I got pregnant, which was a complete shock to me,” she says. She now has two healthy sons, who both tested negative for the NF2 gene.
Recently, she celebrated her 15-year milestone with Dr. Moertel by bringing him a cake, a thank you to the man who stood by her.
“He’s been through it all with me,” she says.
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