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Cara Pressman, 15, hoped for seizure freedom, but her laser surgery was denied Epilepsy Foundation says thousands of people with seizures face similar obstacles from insurers The author of the story has a family member with an uncontrolled seizure disorder who does not medically qualify for either type of brain surgery mentioned in the piece nor has the family member been denied care by an insurance provider. CNN Cara Pressman sobbed in the big red chair in her living room. The year-old tried to absorb the devastating news relayed by her parents: Between tears, she texted them that the whole thing was off. It was supposed to be a joyous weekend. Cara's grandparents had come to town to celebrate their 90th birthdays, a jubilant party with more than family and friends crowding her home. The party did go on -- just with a lot more stress. Cara had multiple complex partial seizures that weekend. When the seizures strike, her body gets cold and shakes, and she zones out for anywhere from 20 seconds to two minutes, typically still aware of her surroundings. Her seizures can be triggered by stress, by being happy, by exerting herself -- almost anything. Read More In the six weeks since the denial, Cara has had more than two dozen seizures affecting her everyday life. Her message to Aetna is blunt: We're looking out for what's best for patients The Pressman family and, separately, Jennifer Rittereiser, a year-old mom who has struggled with seizures since she was 10, approached CNN in recent weeks after they were both denied, by Aetna, 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 are originating. Aetna is the third-largest health insurance provider in the country, providing medical coverage to Neurologists consider laser ablation, which is performed through a small hole in the skull, to be safer and more precise than traditional brain surgery, where the top portion of the skull is removed in order for doctors to operate. The procedure is less daunting for the patient and parents who make decisions for their children: No one likes the idea of a skull opened and a chunk of brain removed. In denying Cara her surgery, Aetna said it considers laser ablation surgery "experimental and investigational for the treatment of epilepsy because the effectiveness of this approach has not been established. The insurance company did approve her for the more invasive and more expensive open brain surgery, called a temporal lobectomy, even though her medical team never sought approval for the procedure. The laser surgery is approved by the Food and Drug Administration and is widely recognized within the epilepsy community as an effective treatment alternative to open brain surgery, especially when the location of seizure activity can be pinpointed to a specific part of the brain. He is not involved in Cara's care nor Rittereiser's treatment, but he said Aetna's assessment is wrong. There've been thousands of patients treated with it. There's a lot of data out there to suggest it's effective for epilepsy. Recovery time after open brain surgery can range from six to 12 weeks. By contrast, a patient who undergoes laser ablation can be back to work or at school in less than two weeks. The pain from laser surgery is much less, and extreme headaches are fewer than with open brain surgery, Van Gompel said. Pressed by CNN for a better explanation on its denial, Aetna stood by its rejection for Cara and Rittereiser, saying it was in the best interest of the patients. But the language was softened slightly. Cara Pressman was 9 when her seizures started. She's had them in the classroom, on the soccer field, during softball games, on stage during plays. As noted by the Epilepsy Foundation, only studies with a very small number of participants have been used to report the effectiveness of this procedure. We consistently evaluate any new studies or additional evidence when developing our clinical policy bulletins, and will continue to do so for this procedure. Laser ablation surgery "has emerged as a new minimally invasive surgical option that is best suited for patients with symptomatic localization-related epilepsy," said Dr. Jacqueline French, the chief science officer with the Epilepsy Foundation. Jennifer Rittereiser, 44, was denied laser ablation surgery. She was hoping the surgery would stop her seizures so she could spend more quality time with her sons. Gattone knows first-hand the pain of what Cara's parents are going through. His own son began having seizures when he was 4 and underwent brain surgery in the early s. The device used for laser ablation surgery was approved by the FDA nine years ago. Gattone said people with seizures, their caregivers and their doctors should not be "spending critical time in the midst of a health-care crisis, filing paperwork, making appeals or otherwise going through the motions of administrative paperwork" trying to get approval for a life-changing operation. Mom who crashed with kid in car gets denied Jennifer Rittereiser lost consciousness behind the wheel of her silver SUV while driving with her 7-year-old son, Robert, in April. Her SUV rammed into a car in front of her and struck it again before veering into oncoming traffic. Her vehicle careened down an embankment, flipped over and came to rest on its side amid a tangle of brush. She narrowly missed slamming into a guardrail and several trees. Mom and son somehow managed to walk free unharmed. Jennifer Rittereiser's SUV plunged into an embankment after she had a seizure while driving in April. I am extremely fortunate just from that sense. For much of her life, she could tell when the seizures might come. These weren't like the seizures depicted in Hollywood movies; she wouldn't fall to the ground and writhe. She would zone out for a spell. She could understand people and could still function but couldn't speak back -- or if she did, her words were garbled. As an executive in the health care industry, Rittereiser has fallen asleep during meetings. When she senses a seizure coming, she rushes to the bathroom to hide until they go away. One time, she says she urinated on herself at her desk without realizing it. Rittereiser had a crash in in which she rear-ended a car after she had a seizure. No one was hurt in that crash, but she stopped driving for more than a year. Her medications were tweaked, and her seizures were largely kept in check, until the crash this April. She was soon evaluated by an array of doctors and recommended for laser ablation surgery. After 34 years of struggling with seizures, she thought her ordeal might finally come to an end. Surgery was set for June But in late May, Aetna denied the surgery. She fought Aetna's decision through a lengthy appeals process. Aetna refused to budge. She said she recently went to Aetna's website to look up the company's values. They're talking about promoting wellness and health and 'being by your side. The mom fell to the floor and wept. She called Cara's father, Robert. He was at the airport picking up his year-old parents for their birthday party. Mom and Dad rallied for their daughter and gathered strength to break the news. That's when Cara sat in the red chair, crying inconsolably. Julie Pressman says she will never give up the fight for her daughter.
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