CHICAGO — Sunday services once triggered Caylee Adams’ epilepsy.
For Adams, the seizures started in church. She would pass out in the pew.
“I looked over and her eyes we’re closing and so I nudged her and was like, ‘Caylee, don’t fall asleep in church!’ he mother Cindy Adams said.
“Next thing I know I would wake up and be in the middle of the aisle,” Caylee Adams said.
The then-8th grader was diagnosed with epilepsy.
“It’s just haze,” she said. “And you just don’t remember what’s happening at that time. And then within 10 seconds to 30 seconds you’re right back at it.”
She saw multiple neurologists and took high doses of medication to help control the random seizures that only increased in frequency throughout high school and college. On MRI, her brain looked normal and provided no answers.
“It was just hard to see her because we couldn’t do anything for her,” Cindy Adams said.
Finally, Northwestern Medicine neurologist Dr Stephan Schuele offered Adams an opportunity to pinpoint the cause. He placed tiny needles in her brain. It’s a procedure called steroencephalography.
“It allows you to put, through very small little burr holes, depth electrodes which go directly in the area of the brain you are suspecting generates the seizure,” Schuele said.
What looks like torture ultimately offered a sense of relief. Even though Adams’s trouble area was near a critical memory center – the hippocampus – doctors determined they could move forward with treatment since the seizures were actually generated in the amygdala.
“We were able to spare the important tissue,” Schuele said.
Surgeons used a laser probe – placed deep in the brain — to destroy the source of Adams’s seizures.
“At the end of the day the only real cure is removing the area that is abnormal and generates the epilepsy,” Schuele said.
Since undergoing the procedure in November 2020, the speech pathologist has been seizure-free. And she’s ready to head back to church.
The 26-year-old is engaged and busy shopping for wedding dresses.
“It’s nice to be able to see her because she always doubted herself and she had struggles in college and in grad school,” Cindy Adams said. “So it’s nice to see she beat all those odds. And now she’s living her life independently and able to do things she couldn’t do before.”
While this procedure is not new, doctors say few patients know it’s an option. And they urge patients with uncontrolled seizures to seek help and perhaps a second opinion.