Carter Caldwell, a 46-year-old business executive, suffered from uncontrolled seizures for years, but it wasn't until he underwent brain surgery after a serious fall that doctors were finally able to pinpoint the "very unusual" cause of his seizures, Sandra Boodman writes for the Washington Post.

'A pivotal moment' with a patient's seizures

In 2004, Caldwell, who was then 28, experienced his first seizure while living in Chicago. According to Caldwell, he walked into his condo, "froze briefly and stared into space, then kept walking." A week later, he suffered a grand mal or tonic-clonic seizure in his sleep, which ultimately led to him being hospitalized and diagnosed with epilepsy.

Over the years, Caldwell's seizures continued to increase in frequency despite being on various medications. Although he had tried more than a dozen drugs, none were able to control his epilepsy. "What was strange was that I would try a new [drug] and my seizures would change," he said.

Several doctors recommended Caldwell consider getting surgery to remove the area of the brain where his seizures could be originating, but "the prospect was too frightening," Boodman writes. Caldwell worried that surgery would damage his memory, language abilities, or hand-eye coordination beyond repair.

Instead, Caldwell made adjustments, such as no longer driving and staying at the back of the train platform, to ensure that he could minimize certain hazards in his life. Although his seizures still occurred, he was typically able to escape relatively unscathed.

However, in 2014, Caldwell "[w]ithout warning … began an awkward shuffling walk that signified the onset of a seizure" while taking pictures with his family at Valley Forge National Historical Park in Pennsylvania, Boodman writes. Caldwell soon lost consciousness and fell headfirst down a 15-foot embankment before landing near a stream.

After the accident, Caldwell spent two-and-a-half weeks in a nearby hospital where he had multiple operations on his shattered eye socket, broken jaw, and lacerated cheek. At this point, he was convinced that brain surgery was the only option to treat his seizures.

"It was a pivotal event," Caldwell said. "I had never had a seizure where I had become so injured."

Surgery reveals the answer to the patient's uncontrolled seizures

According to John Pollard, Caldwell's longtime neurologist and former associate director of the epilepsy center at the University of Pennsylvania, Caldwell's resistance to getting surgery "was neither surprising nor atypical," Boodman writes.

Many patients are "worried that brain surgery is going to change who they are," Pollard said. "Any neurosurgery is terrifying. We think of ourselves as being our brain." However, if Caldwell did not get surgery, Pollard said he could face serious injuries or even sudden death during a seizure.

In 2015, Pollard referred Caldwell to Timothy Lucas, a former Penn neurosurgeon who is now a professor of neurosurgery at Ohio State University.

According to Caldwell, his meetings with Lucas, as well as support from Pollard, helped him feel more reassured about having surgery. "Dr. Lucas was so calm," Caldwell said. "He would sketch things out for us," including explaining that the brain rewires itself to compensate for anything removed during surgery.

To prepare for his surgery, Caldwell enrolled in a research study where a powerful MRI scanned an abnormal lesion in his right lobe that had previously been identified years earlier. Initially, doctors had hypothesized the lesion could be a dysembryoplastic neuroepithelial tumor (DNET), a type of rare, benign tumor that can cause medication-resistant seizures like Caldwell's.

Although the MRI appeared to confirm the DNET diagnosis, doctors could not be certain until it was physically removed.

Next, Caldwell underwent intracranial monitoring, a procedure where electrodes are implanted inside the skull to record electrical activity in the brain and pinpoint the location of seizures. This procedure also allows surgeons to map critical brain areas so they can protect them during an operation.

Ultimately, the monitoring found that Caldwell's seizures all originated in the area of the lesion on his right lobe. A few weeks later, Lucas removed part of Caldwell's right temporal lobe, the right hippocampus, and a part of the amygdala, and pathologists confirmed the "very unusual" cause of Caldwell's seizure had in fact been a DNET.

'The biggest change has been the absence of fear'

Caldwell spent six weeks in the hospital recovering before going home. A few weeks later, Caldwell attended an annual conference and was "greatly relieved when he had no trouble recognizing anyone," Boodman writes. His hand-eye coordination was also just fine when he played squash with a friend a few weeks later.

In the years since his surgery, Caldwell has been seizure-free, and although most people who are seizure-free for a year can stop taking medication, he has so far been reluctant to do so. "You don't mess with success," he said, but added that he may wean himself off his anti-seizure medications at Pollard's encouragement.

Overall, "[t]he biggest change has been the absence of fear, which had come to dominate his life," Boodman writes.

"I'm not constantly worried" about having a seizure, Caldwell said, adding that he wished he had considered getting surgery sooner. "It took that episode at Valley Forge Park to really wake me up." (Boodman, Washington Post, 10/15)