It began with piercing headaches accompanied by glimpses of flashing light. Then came the memory issues. Parked cars couldn’t be found. The names of old friends couldn’t be remembered. It became hard to swallow, then hard to even talk.
A cloud of depression began to form, and the sweet teenager from Hattiesburg, Miss., turned mean and agitated. This was Kassidy Anderson’s deteriorating world during the first half of 2018. Her life became a series of medical tests and shrugs. Doctors attempted to explain the symptoms as being caused by migraines, but in reality, nobody was quite sure what was going on. The situation steadily worsened, to the point that Kassidy finally looked at her mother and sternly declared, “If I don’t get some help, I’m going to die.”
Turns out Kassidy didn’t need another test as much as she simply needed somebody to truly listen to her. She found that person in Michael Vaphiades, D.O., Chief of Neuro-Ophthalmology and Electrophysiology Services at UAB Callahan Eye Hospital. What Vaphiades heard when he met Kassidy in June of 2018 eventually led him to diagnose her as having anti-NMDA receptor encephalitis, a rare autoimmune disease that attacks the brain. The condition was depicted in the 2016 movie Brain on Fire.
“The way she described certain things made me think she had something like that, even though the initial testing was negative,” Vaphiades says. “She said she was feeling out of touch and having these weird episodes, but the way she described them didn’t sound like seizures to me. She had headaches that couldn’t be accounted for by anything on the imaging or the spinal taps.
“I knew it was a real longshot, but it was one of those instinct things. I can’t fully explain why I felt so certain it was that, because this was way out of the realm of anything I had ever seen.”
Kassidy had never heard of anti-NMDA receptor encephalitis, but once she researched the condition she quickly agreed that it sounded exactly like what she was experiencing. Vaphiades began treating her with Intravenous Immune Globulin, then started searching for the cause. It took several months and dozens of additional conversations with Kassidy and her mother before a teratoma tumor was discovered on Kassidy’s ovary. Once the tumor was removed through surgery, Kassidy rapidly improved.
“Dr. V really listened to what I had to say and never doubted what I was saying,” says Kassidy, who is now studying to be an ophthalmologist and has shadowed Vaphiades in the clinic a few times. “That communication was vital. It was really important to me and made me trust him. When I told him (after the surgery) that I was doing better, he teared up. He had that much of a relationship with me. He really cared, and that mattered to me.”
Without that level of commitment, Vaphiades wonders whether Kassidy’s condition ever would have been correctly diagnosed.
“You can’t let a negative test lead you around by the nose. You have to talk to your patients and really listen to your patients,” Vaphiades says. “And if what they’re saying makes you really believe they have something, you just have to be persistent and stick with it.”
by Cary Estes