SOUTH BERWICK, Maine – On “bad brain days,” Karen Briggs suffers from foggy memory, searing headaches with pain so severe she can’t open her eyes for long periods of time.
“I kind of stopped making plans and I work, but not much. It’s just been a weird few years and I didn’t realize how lonely I was getting until recently,” she said.
The South Berwick resident has been suffering from these symptoms and perpetually blurred vision for two years, in what doctors and she believe is a rare neurological condition. As a result, Briggs turns to crowdfunding to get medical help to correct her vision problems.
Briggs, 30, is seeking $25,000 from a self-launched GoFundMe page for potential neurosurgery that would remove a noncancerous mass near the pineal gland in her brain. According to Briggs, vision problems that began in the summer of 2020 resulted in her having numerous appointments with doctors and eventually a neurologist in Maine, who believes the condition she suffers from is cerebral polyopia.
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Symptoms of cerebral polyopia
The condition, which matches the symptoms Briggs experiences, causes people to see a variety of objects, people, images, and scenes, in addition to persistent headaches and trouble sleeping. Briggs said she learned about the rare condition through her own research and kept proposing it to doctors, although she noted that due to its relative obscurity, many medical providers were unaware.
“Looking back, almost everything happened because I pushed, which is a little frustrating,” she said of her two-year odyssey of consulting with medical providers. “At least I had neurologists listening enough to help. I’ve seen stories of people nobody listens to, nobody believes.”
From the onset of her symptoms, Briggs described seeing all images, people, objects, and scenes as vertically blurred. Using a digital clock as an example, Briggs’ blurred vision causes her to see the numbers in layers, a dizzying effect she’s been experiencing for the past two years.
“Bad brain days” and memory fog have forced her to withdraw from people in her life and spend most days at home. She no longer drives, rarely reads, and is unable to paint to her typical standards due to her vision problems and pain.
“It was really amazing,” Briggs said of the beginning of her vision problems. “I always have a headache. I can’t remember not having a headache for about a year and a half.”
Collect donations for brain surgery
Briggs is seeking the means to book appointments with Dr. Sunil Patel, chair of the Department of Neurosurgery at the Medical University of South Carolina, one of the few surgeons in the world experienced in removing pineal masses, according to his online biography.
“It’s sad that people really have to do this,” she said of public fundraising for medical procedures. “I searched ‘brain surgery’ on GoFundMe and there are hundreds of them. There are only hundreds of them, it’s crazy.”
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A research article on cerebral polyopia published by the American Academy of Ophthalmology notes that the disease was first identified in 1908 by Italian neurologist Dr. Giovanni Mingazzini.
“The extreme rarity of the disease, similarities to other more common visual disorders, and differences in presentation have hampered the ability to properly understand the etiology of the disease and find appropriate treatments,” the article reads.
Patel, in a video posted to the Medical University of South Carolina’s website, compared the size of the pineal gland to a person’s fingertip at the center of the brain and compared the pineal gland to the appendix.
“In short, I would say that most people don’t know what the function of the pineal gland is in humans,” he said.
The neurosurgeon determined that the pineal gland produces melatonin, but it’s uncertain whether the gland’s production of the hormone contributes to the sleep-wake cycle.
“When you remove the gland, there are no objectively measurable, functional differences or changes in humans associated with the pineal gland,” Patel said in the video.
Difficulty getting a diagnosis
As her symptoms began to worsen two years ago, Briggs said numerous doctors she saw told her they were unable to diagnose, let alone possibly operate on her.
The research she conducted led Briggs to contact a neurologist in Alabama who had been studying cerebral polyopia. With the neurologist’s guidance, Briggs and her neurologist in Maine determined that she had cerebral polyopia.
Associated with a support group for people battling masses in the pineal gland, Briggs was referred to three surgeons who have operated on masses, including Patel.
The South Berwick resident, who has already raised over $14,000, started the fundraiser because her insurance would not cover procedures performed by Patel. Though she can add to her fiancé’s insurance by possibly marrying him sooner than expected, the fundraiser would cover the deductible and other necessary expenses like flights to South Carolina and hotels.
Estimates of these expenses and more than three trips to South Carolina—one for patient admissions, another for a consultation, and possibly a third for surgery—put Briggs at a total of $25,000.
In 2019, Briggs and her family set up a GoFundMe to support her father’s cancer-fighting bills. He passed away in May 2020.
Briggs’ second attempt at the online crowdfunding platform comes at a time when her pain is so severe, she said, she won’t open her eyes until it’s over.
“I’m not usually the most patient person. That made me a lot more patient. But the wait means I have to think about the surgery a lot longer, and I overthink things a lot,” she said.
If surgery to remove the mass in her pineal region was approved, Briggs noted that the procedure likely wouldn’t happen until the fall of 2023.
Donations are accepted at gofundme.com/f/help-karen-briggs-get-brain-surgery.