A 15-Year Partnership in the Fight Against NF2
Lindsay Shvetzoff finally found hope and life-saving treatment at M Health Fairview University of Minnesota Medical Center after being denied care across the country for her rare disease.
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 Christopher Moertel, MD.
“He must have seen how devastated and lost I looked, but he approved the treatment for me, and so that's ultimately what brought me to him,” Shvetzoff says.
The journey to that moment began a year earlier. “I was diagnosed via accident,” she explains. 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, they just really chalked it up to, maybe I was born that way,” she says. Imaging revealed tumors in her brain and spine, leaving her in a “state of shock.”
As the tumors grew, other doctors proposed a surgery with devastating costs. “They recommended surgery and that would leave me deaf partially paralyze my face,” she says. 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 for NF2 and cost thousands of dollars per dose, “They wouldn't approve me for Avastin,” she says.
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 Dr. 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.
“You're not just a number to Dr. Moertel,” she says. “He gets to know the families and his patients, and he truly cares about their lives, and the long term.”
For 15 years, Dr. 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. “For the most part, I tolerate it very well, and it does so much more good that it outweighs any of the symptoms,” she notes.
When surgery was unavoidable, the University of Minnesota Medical School and M Health Fairview were there. She notes, “My neurosurgeon Dr. Andrew Venteicher, MD, PhD did a wonderful job.” She also highlights oculoplastic surgeon Andrew Harrison, MD, 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.
Shvetzoff also contributes to the future of NF2 research by visiting the National Institutes of Health. “I’m part of a clinical trial they run to gather more data on NF2 and how it impacts patients over their lifetime,” she explains. 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.