Looking back now, Kim Grau knows the exact source of the puzzling symptoms that began plaguing her in 2017.
But some of the sensations were so unusual that she still finds them hard to describe. Like the vivid images of My Little Pony and other cartoons from her childhood that would suddenly pop up in her mind.
“It was so strange,” Grau, 36, told TODAY. “It felt really random and then it would be gone.”
In addition to the odd flashbacks, she started experiencing uncomfortable episodes of fear, which she thought were panic attacks. Then there was the brain fog, which was subtle at first but got to the point where Grau had to really focus to be a part of a conversation. She still remembers attending a conference where she was asked the name of the company she worked for and blanked.
“I could not figure out where I worked. I was trying to pull it out of my mind, search for it, and I couldn’t figure it out,” recalled Grau, who is an event director in Bartlett, Illinois.
“I’m like, this is so embarrassing. I was 34 years old at that time, and I know where I work and who I am. But I just couldn’t pull it out of my mind.”
Worried about her mental health and feeling the symptoms intensify over the years, Grau began seeing a counselor in early 2020. That led to a referral to psychiatrist, who confirmed she was likely experiencing panic attacks and prescribed Xanax, a medication to treat anxiety and panic disorders.
When Grau thought she was having a panic attack, she would take one of the pills. But it didn’t help.
It wasn’t until the spring of 2020 that a frightening incident finally led to a diagnosis. On the morning of April 25, Grau’s husband, Anders, woke up to her screaming. When he tried to comfort her, he saw she was unconscious, with her arms stiff and her jaw clenched. Grau was in the grips of a grand mal seizure, a type that involves the entire body.
“This was our first year of marriage… my poor husband,” Grau said. After she came out of the seizure, “he said I sat up and it looked like I was a computer turning back on and trying to process the room.”
After the couple rushed to the nearest hospital, an MRI and additional tests revealed what was wrong: Grau had a tumor growing deep in her brain.
Mystery as 100 people associated with 1 school develop brain tumorsApril 16, 202202:14
'The symptoms are so oddball'
That tumor was causing seizures, which lead to some of the strange symptoms she experienced, said Dr. Matthew Tate, a neurosurgeon at Northwestern Medicine in Chicago, who removed the growth last year.
With seizures, the brain is irritated and enters a rhythmic pattern — if that pattern spreads far and goes to both sides of the brain, patients experience generalized seizures, the type people know from TV where a person loses consciousness, jerks and shakes, he noted.
If it’s not as widespread, then the symptoms relate to where in the brain the pattern is located and what that part of the brain does. Such focal, or partial seizures, were responsible for Grau’s episodes of fear and other problems.
“Based on wherever that’s occurring, you can get different symptoms that can range from things like what Kim had. Some folks smell burnt toast or have odd smells, people can have a sense of déjà vu,” Tate said.
"If it’s near the movement area, you’ll see twitching or if it’s near the sensory area, the patient will experience tingling."
People are often misdiagnosed with panic attacks because they’re much more common than having a tumor, plus patients also experience a fast heart rate and feel a sense of doom coming over them — “very common symptoms with seizures,” he noted.
Some people hear sounds from childhood or experience familiar fragrances from that era — sensations that can be hard to describe for a patient who may think they’re “loopy or kind of going crazy,” Tate said. “Or folks just don’t believe them because the symptoms are so oddball,” he added.
Grau had a dysembryoplastic neuroepithelial tumor (DNET) — a benign growth that was located deep in the frontal lobe of her brain. Tate was a part of a medical team that removed it in January 2021, going in between the two halves of the brain to reach the challenging spot.
They removed as much of the tumor as possible, though Tate said microscopic bits of it can sometimes remain, which means the patient needs regular imaging to make sure it doesn’t come back over time.
Grau said she was in complete peace going into the surgery, relying on her faith and lots of prayer. The recovery went well, although she struggled with a lack of energy in the aftermath. More than a year later, she’s feeling well and hasn’t had a seizure — or strange flashbacks to her childhood cartoons — since the tumor was removed.
There’s lots to look forward to: She and her husband are expecting their first child.
“This procedure really helped us to have confidence in moving forward with our family,” Grau said. “We are just really grateful.”