CLEVELAND — She thought she was losing her mind, but a medical mystery was taking her life.
Lauren Wells started the pandemic in one of the most vulnerable places in Ohio: a nursing home near Toledo.
By the end of May, Lauren had a promotion and move to Sandusky, but two months into her administrator job, strange things started happening.
“My skin just felt very wrong, like a film being on it, or it felt sticky, I was also hearing music that really wasn't there, I was lying in bed and I heard seagulls and there were no seagulls,” Lauren said.
The music sounded like elevator music, or like she was hearing static and talk radio, but there was no source for the sounds, which kept getting worse.
“The hallucinations, auditory and tactile were just like taking over my life. It was all I could think about,” Lauren remembers.
Physical symptoms too, including nausea and left side pain. Early one morning she couldn’t take it anymore and drove herself to the ER. Despite dozens of tests, doctors found nothing.
“At this point, everyone thought it was psych-related. It was mental illness," Lauren told 3News' Monica Robins.
Lauren’s family lived seven hours away in Pennsylvania. Her best friend came to stay with her. But when Lauren arrived at work the next day to lead a meeting, she was totally unprepared and seemed catatonic. Her staff called 911. When Lauren realized she was back at the hospital, she checked herself into the psych ward.
The last thing she looked up on her phone was symptoms of schizophrenia.
“After a couple of days of me acting pretty manic, pretty insane in the psych hospital, I had my first seizure,” she said. “My, my dad got a call that I was rigid and unresponsive but at this point, I was really being pumped full of like every anti-psychotic you could think of, and none of them were working, because they wouldn't work.”
Her father raced to Ohio and Lauren moved to intensive care in the community hospital. Meanwhile, a family friend, a psychiatrist, suggested a possible cause.
“He told my dad to have them look into NMDA encephalitis,” Lauren said.
NMDA antibody encephalitis is an autoimmune disease that can cause psychiatric issues like hallucinations, confusion, memory loss, and seizures. Exactly what Lauren had.
NMDA Encephalitis is a type of brain inflammation caused by antibodies.
The problem? The condition is rare and the doctors at the community hospital weren’t familiar with it. That's when Lauren’s dad transferred her to Cleveland Clinic.
“In very rare cases, those antibodies attack your brain,” Lauren said. But doctors at Cleveland Clinic needed to know why the antibodies were running rampant, there had to be a source. About half of cases of NMDA encephalitis are linked to tumors.
“In her case, though, she had what we referred to as a paraneoplastic syndrome. Meaning, she had the tumor at the time that nobody knew about,” said Dr. Joao Gomes, one of Lauren’s doctors who works in Cleveland Clinic’s Cerebrovascular Center.
Within 48 hours, the Cleveland Clinic team found it. A teratoma on her ovary. A rare type of tumor that can contain fully developed tissues and organs, including hair, teeth, muscle, and bone.
“It was 13 centimeters, like the size of like a second-trimester baby,” Lauren said.
Lauren, still fighting the encephalitis and on a ventilator, was rushed to surgery to have the teratoma removed.
Usually, teratomas are benign, but once again, another disappointing surprise. Lauren’s was malignant.
After spending a month on a ventilator in the ICU getting IV medication to attack the encephalitis, it was time to move to the oncology floor and start chemotherapy. It seemed everyone was working on her case.
“We had different neurologists, we had rheumatologists, we had oncologists, we have gynecologists, surgeons, nurses, I mean, the list goes on and on and on with everybody who actually participated in her care and everybody contributed and made it possible for her to have had the good outcome,” Dr. Gomes said.
Two months of her life were spent in the hospital, chemo, and rehab- but it wasn’t over. The intubation damaged her vocal cords and she needed additional surgery this past April to repair them. But Lauren has a different perspective.
“I mean, rare is rare. And I think without the advocacy of my father and my family, and without knowing a psychiatrist who knew what this diagnosis was, I don't know where I'd be. I don't know how much worse it would've gotten,” Lauren said.
She hopes her story teaches people to advocate for themselves and their loved ones.
Lauren now lives in Cleveland to continue her follow-up medical appointments, but she’s back at work, in a new nursing home, and just started graduate school. She’s living proof that what started as a medical mystery, became a medical miracle.
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