Elizabeth “Betsy” Berlin was 11 when she was finally able to put a name to her condition: epilepsy. The diagnosis required visits to four different hospitals. But her parents never wavered in their persistence, so neither did Betsy.
At 24, Betsy underwent a partial temporal lobectomy, an “open surgery” that entails opening the skull and removing the part of the brain where the seizures are coming from. The procedure lasted seven-and-a-half hours, and Betsy was awake throughout.
It was a trying experience, but the surgery eliminated her seizures.
Volunteering on the Neurology floor at the Children’s Hospital of Philadelphia 15 years later, Betsy shared her story with distraught families, providing hope when it seemed like there was little to be had.
“That was one of the best feelings I’ve ever had, helping some of the families on that floor,” she says.
When Betsy had a seizure in 2021, 37 years after her temporal lobectomy, she wasn’t sure what to make of it. The entire episode was different from what she remembered. There was no aura, a focal aware seizure that can — and has, for Betsy – signaled a more significant seizure was on the way. Her husband, Norman, sensed something was wrong. He asked, “Betsy, are you OK?” She replied, “I have to get the kids out of their car seats.”
Their children are 30 and 31.
Betsy describes that kind of seizure as a “déjà vu seizure.” She also experienced what she calls “staring seizures,” where she would stare into the near distance without hearing any sound.
Brian Litt, MD, an epileptologist in the Comprehensive Epilepsy Center. It’s not clear why Betsy’s seizures returned, he says. But sometimes, the tissue left behind in a partial temporal lobectomy can very gradually develop the ability to generate seizures.
At the first sign of the seizures, Dr. Litt increased Betsy’s dose of Lamictal. (She continued taking seizure medication after her surgery in 1984.) However, her face quickly became covered in red spots, and she itched all over.
Dr. Litt’s responsiveness is one of several reasons Betsy cites for her adoration of him. She reported the side effects to him immediately. He treated her, and the rash rapidly went away.
After four seizures, they subsided, only to return less than a year later in March 2022.
On one occasion, Betsy lost consciousness during a seizure and Norman caught her as she fell to the ground, but not before she hit her head on the way down. Betsy was rushed to the hospital by ambulance.
Following that episode, Dr. Litt recommended a video EEG, a test in which both the patient and the electrical activity of their brain are recorded during a seizure. It’s designed to help neurologists determine the precise nature of the seizures and where exactly they’re originating.
Moving forward, with determination
Betsy was admitted to the Epilepsy Monitoring Unit at the Hospital of the University of Pennsylvania in May 2022, just a few weeks before her son’s wedding. Once she was made aware of a potential means to end her seizures, she was determined to put the process in motion as soon as she could.
“I’m a fighter,” she says. “A nice fighter.”
During the video EEG, Betsy had eight significant seizures, including some that would not have been noticed without the EEG, according to Dr. Litt. With that data, he and his team were able to trace her seizures to the tissue in the middle of the temporal lobe — her dominant temporal lobe — that was left behind from her partial temporal lobectomy.
The dominant temporal lobe is where memory and language function are located in the brain, “so you don’t want to remove more than you have to,” Dr. Litt says. He recommended removing the problematic tissue through a precise, minimally invasive surgery called Laser Interstitial Thermal Therapy (LITT), or laser ablation.
Betsy appreciates that Dr. Litt is as proactive about her treatment as she wants to be. In this instance, LITT was a relatively conservative choice. The location of the tissue could be accessed by the laser with minimal disruption to the surrounding structures of the brain. But if the treatment wasn’t effective, Betsy would need a more invasive temporal lobectomy.
A less invasive alternative
In certain people, LITT can destroy the brain cells causing seizures with pinpoint accuracy. Laser technology delivers a set amount of energy to the targeted area of the brain — the left hippocampus, in Betsy’s case. That energy changes into thermal or heat energy, which then destroys the seizure focus. The laser energy is monitored by MRI and a computer to ensure the surrounding brain tissue isn’t affected.
For Betsy’s surgery, in November 2022, Penn neurosurgeon Isaac Chen, MD, placed a laser probe through a small hole in her skull.
Patients who undergo LITT usually stay in the hospital for a night or two after the procedure. For comparison, patients who undergo “open surgery” go home after an average of three to five days.
Studies have found LITT to be about as effective — with less side effects a quicker recovery — as “open surgery” for the right patients, including those who have found little reprieve from their seizures through medication and whose seizures are caused by a single abnormal brain region.
“It used to be that if medicine didn’t control someone’s seizures, the only time you could consider surgery was if their seizures were well-localized to a region that was easily removed surgically,” Dr. Litt says. “Otherwise, you’re disrupting other parts of the brain to reach the target, which carries the potential of cognitive and psychiatric side effects. But minimally invasive surgery with lasers and robotic-guided electrode and device placement have really changed that, allowing us access to areas that were traditionally not accessible in many patients.
“And for patients who have seizures that come from places that aren’t amenable to a surgical intervention, we can implant a brain stimulation device, which can significantly reduce their seizures,” he adds.
Gradually gaining confidence
Betsy has been seizure-free since her LITT. At the time of this writing, that’s seven months and counting. Dr. Litt says it’s too soon to say whether the procedure has stopped her seizures entirely. Nonetheless, it is encouraging.
Betsy continues to take two seizure medications, Lamictal, which she’s been prescribed “for years,” and Vimpat, which Dr. Litt started her on shortly before the surgery. In recent months, she says she’s felt calmer. Her cholesterol has also plummeted 50 points. Dr. Litt suspects it may be the result of Betsy being more active, eating better, and generally being able to better attend to her health.
After her partial temporal lobectomy, Betsy waited a couple of years before getting her driver’s license. She was afraid to drive, she says. But each day she went without having a seizure, her confidence grew.
When her seizures returned, Betsy stopped driving. She says a busy schedule since her surgery is keeping her from getting back behind the steering wheel. But Norman knew better. He took her to a nearby parking lot so she could get comfortable again with the idea of driving — and leading a life without seizures.