Sunday, September 16, 2018

Laser ablation surgery for temporal lobe epilepsy 2

Cara became a viral sensation months ago after the teen with a seizure disorder delivered a blunt message to her insurer. Her two words for Aetna -- "screw you" -- expressed the anger she felt at being denied a minimally invasive brain surgery that promised to end her seizures.
Her story, first told by CNN in December, triggered a massive uproar, and Aetna eventually approved the procedure.

This Saturday evening, amid the cheers of her closest friends, Cara radiates on stage beneath strings of white flashing lights. Then someone shouts, and the dance floor clears. Everyone rushes outside. It's as if Mother Nature has joined the party: A rainbow stretches from the Hudson River high into the heavens…

Each time they struck, her body would grow cold and shake. She'd zone out anywhere from 20 seconds to two minutes, typically still aware of what was going on around her. She had seizures on the soccer field, during softball games, on stage during plays, in the classroom. Most anywhere. Her doctors last year recommended Cara for laser ablation surgery, a minimally invasive procedure in which a thin laser is used to heat and destroy lesions in the brain where the seizures originate. It's cutting-edge work, performed through an eighth-inch hole in the skull. Neurosurgeons believe it to be more precise and less invasive than traditional open brain surgery, in which a two-inch hole is cut in the skull or, in some cases, the entire skull cap is removed…

Yet the nation's third-largest insurance company overruled her treating physicians. In denying her coverage, Aetna said it considered laser ablation surgery "experimental and investigational for the treatment of epilepsy because the effectiveness of this approach has not been established."
"Clinical studies have not proven that this procedures [sic] effective for treatment of the member's condition," Aetna said.

When first approached for comment by CNN late last year, the insurance giant stood by its denial.

Cara underwent the laser ablation surgery on July 25. Three weeks later, she says she's adjusting well: "It kind of feels like it's a little bit of a dream, but I also know it's real."

In response, Cara had this message: "Considering they're denying me getting surgery and stopping this thing that's wrong with my brain, I would probably just say, 'screw you.' "

From there, the story took off. The hashtags #ScrewAetna and #CaraPressman were shared across Twitter. Her grandmother made T-shirts for family members for Christmas that read "I'm on Cara's team" on the front; on the back, the message said #SYA (short for #ScrewYouAetna).

Behind the scenes, neurologists and neurosurgeons reached out to the family, offering support. But none was more powerful than Mark Solazzo, the executive vice president and chief operating officer of Northwell Health, New York's largest health care provider.

The hospital executive was so moved by Cara's story he told the family: "This is the last day you're going to fight Aetna on your own."

Solazzo is passionate on this issue: Insurance denials for what Northwell deems medically necessary procedures have swelled the past two years, with the health provider saying it lost $150 million in justifiable reimbursements at a time when insurance companies have been setting record profits. The Northwell executive set in motion a chain of events. He tapped Dr. Ashesh Dinesh Mehta, the director of Northwell's epilepsy surgery, to handle Cara's case and even offered the surgery for free if Aetna still refused to cover it.

"I was happy to do that," Mehta said.

Cara underwent a series of tests this spring with her new team at Northwell. Mehta said her case was complex because the focal point of her seizures was fairly deep in her brain behind her temple. To perform an open brain surgery, he said, he would need to dissect a portion of her brain to get to the spot.

As a result, Mehta said, her team agreed with her previous doctors that laser ablation was the route to go.

"We did our due diligence, and we did determine that this would be the best way to treat her epilepsy," he told CNN.

Along the way, Aetna had a change of heart. In April, the insurer notified the family it would cover the surgery: "Coverage for this service has been approved, subject to the requirements in this letter."…

Mehta gave all the credit to the diminutive teen with the powerful voice: "She really advocated for herself, and it worked out for her. Whatever happened, it got her the appropriate treatment. I've got to hand it to her."

Northwell's Solazzo added, "Cara has been an inspiration to all those who have had the privilege of caring for her. Her advocacy and courage will hopefully clear the way for other epilepsy patients who could benefit from this surgery."…

Cara told staff at North Shore University Hospital in Manhasset she had "never been more excited for anything in my life." Her first grand mal seizure, when she fell to the floor and shook, came at the age of 9, but she remembers having smaller aura seizures, when she would space out for brief spells, as far back as kindergarten. She can have five seizures in a day, sometimes as many as 30…

There are only about 40 to 50 centers around the nation, Mehta said, where laser ablation surgeries are performed, with the technique becoming more popular in recent years. Mehta said existing data show about a 50% seizure-free rate for those who undergo laser ablation, compared to about 70% who undergo traditional open brain surgeries.

A comprehensive study is underway to better define its efficacy. But Mehta said he has had better success than the national average: "My results are about as good as the open temporal lobectomy." The laser surgery is more appealing to patients and parents, he says, because open surgery can be so daunting. Laser surgery is less invasive, requires less time in the hospital and has a quicker recovery, Mehta said…

Cara had one grand mal seizure in the days after the surgery, but she'd forgotten to take her anti-seizure medicine the day before. Mehta also says it's not unusual for patients to have seizures in the week or two right after surgery.

Based on her recovery three weeks after surgery, he believes Cara has a 60% to 80% chance of being seizure-free. The benchmark will be a year from now. "The big question is whether she will have one or two seizures a year or whether she has no seizures," Mehta says. "We want no seizures.

"I'm keeping my fingers crossed."


1 comment:

  1. Along the way, Aetna had a change of heart. In April, the insurer notified the family it would cover the surgery: "Coverage for this service has been approved, subject to the requirements in this letter."

    There was no explanation. No apology. Just an approval with full coverage.

    Pressed by CNN for answers, Aetna said the approval came after her doctors made a new request for laser ablation surgery. "Based on recently published clinical evidence, the procedure was approved."

    Aetna went on to say it recently updated its policies for epilepsy patients seeking laser ablation. "Related, in July 2018 we made updates to our epilepsy surgery clinical policies based on recently-published data," Aetna said. "The new guidelines cover laser ablation surgery if certain criteria are met.

    "As shared in December, we constantly evaluate new published and peer-reviewed studies as well as additional evidence when developing our clinical policies, and will continue to do so."