The headline on the front page of the Cincinnati Enquirer included the words, "monster tumor.”
A photo on the newspaper’s website showed a bug-eyed, hallucinating young woman. A video posted on YouTube showed her screaming and babbling incoherently.
All of that was just fine with Kiera Echols. The important thing was that she recovered—with the help of doctors at UC Health University Hospital—and that her story will help educate doctors and the public about a recently identified disease that may have gone undiagnosed for many years.
"It’s been life changing, that’s for sure—spiritually, emotionally and physically,” Echols, 22, says of her bout with what turned out to be a form of encephalitis caused by a tumor known as a teratoma on one of her ovaries.
"I believe God gave this challenge to me for a reason, and if that was to raise awareness for this disease, then that’s what I want to do.”
Echols, of Springfield, Ohio, began having problems last November, when she thought she had the flu.
After she passed out, her parents, David and Chellie Givens, took her to a community hospital where she was diagnosed with meningitis. After a six-day stay, she was sent home but began hallucinating.
Back at the hospital, doctors recommended to her parents that she be admitted to a psychiatric unit.
The Givenses, convinced that there must be a physical cause for the hallucinations, sought a second opinion and Echols was transferred to University Hospital.
Echols immediately underwent a number of tests, including one for anti-NMDA receptor encephalitis.
The disorder was identified in 2007 by Josep Dalmau, MD, PhD, a professor of neurology at the University of Pennsylvania.
In Echols’ case, the teratoma—a tumor made up of different types of tissue—caused the body to develop antibodies against it. The antibodies attacked cells in her brain, resulting in the encephalitis and accompanying hallucinations.
Coincidentally, fourth-year neurology resident Christopher Kobet, MD, was at University Hospital, taking call with a junior resident and helping admit patients. Kobet had developed an interest in anti-NMDA receptor encephalitis and had already seen two cases since the previous April.
"I was walking down the hallway and I heard her vocalizations—she was making some very strange noises,” Kobet says of Echols.
"So I walked in to find out what was going on and talked with her mother and later the medicine rotator (physician). I realized this resembled some of the prior cases I’ve been involved in.”
The encephalitis test indeed came back positive, and Echols’ physicians were convinced that the tumor was present even though it was not visible on any imaging study. (The "monster tumor” headline came from the fact that "teratoma” originates from the Greek word meaning monster, because teratomas can contain hair, teeth and other parts of the body.)
W. Edward Richards, MD, associate clinical professor at UC and director of gynecologic oncology and advanced pelvic surgery at University Hospital, performed the surgery, as he did for the two previous cases Kobet was involved with.
Using robotic technology that provides a 3-D view of the ovary, Richards was able to find and remove the tumor.
"I was pretty much convinced in the operating room that she was going to get better,” Richards says, "and in a matter of hours she started responding to questions that she hadn’t responded to or she had no idea of the answers to the day before.”
Doctors involved in her case agree with Echols that it’s important to get the word out about this recently identified disorder so it won’t go undiagnosed.
In fact, Kobet entered a short film about Echols’ story in the American Academy of Neurology Foundation’s 2010 Neuro Film Festival in Toronto.
While it didn’t win a prize, it was viewed more than 12,000 times on YouTube.
Echols is continuing follow-up care with Alberto Espay, MD, a UC Health neurologist and assistant professor at UC who was also involved in the first diagnosis of anti-NMDA receptor encephalitis at University Hospital in April 2009 and is one of Kobet’s mentors.
"All my doctors have been just amazing,” says Echols, who extends her praise to nurses and staff at University Hospital.
"I couldn’t ask for better care.”