Among this group were 25 who had become seizure-free during the observation time. Although the data say that this probably wouldn’t continue, they still decided not to pursue the surgery, Dr. Carlson said.
A small group (8) was not seizure free but decided that their seizure control was "good enough," he said. "It wasn’t what an epileptologist would consider good control, but it wasn’t serious enough for those patients to have the surgery."
The remaining patients were lost to follow-up or had no record of a specific reason for refusing surgery. Insurance denials only affected two patients who wanted surgery.
Some of those lost who were to follow-up probably eventually had surgery at another center. Patients seek multiple opinions "until they find one that they agree with" or a provider "clicks" with them, Dr. Carlson said.
Both researchers said that primary neurologists and other providers could help by getting the topic of surgery on the table earlier. "It’s something that should be done at multiple time points," Dr. Anderson said. "Mention that they might be a candidate for brain surgery since medical therapy isn’t working well. Explain this means removal of part of the brain and ask what they feel about that – would they consider it if it would get rid of their seizures?
"If they hear this multiple times, then you are introducing this concept and revisiting it with more detailed information each time. Then the patient might be more willing to take that leap."
Neither Dr. Anderson nor Dr. Carlson had any financial declarations.