'Bad brain days': South Berwick woman facing rare neurological condition seeks help

SOUTH BERWICK, Maine — On “bad brain days,” Karen Briggs suffers from a foggy memory, searing headaches with pain so acute she won’t open her eyes for extended periods of time.

“I’ve kind of stopped making plans and I work, but not a lot. It’s just been a weird couple of years and I didn’t realize until recently how lonely I’d gotten,” she said.

The South Berwick resident has experienced those symptoms and constant blurry vision for two years from what she and doctors believe is a rare neurological condition. As a result, Briggs is turning to crowdfunding to receive medical help and correct her vision abnormalities.

Briggs, 30, is seeking $25,000 from a self-started GoFundMe page for a potential neurosurgery that would remove a non-cancerous mass near the pineal gland in her brain. According to Briggs, vision troubles that began in the summer of 2020 led her to have numerous appointments with doctors and eventually a neurologist in Maine, who believes the condition she is suffering from is cerebral polyopia.

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Symptoms of cerebral polyopia

The condition, which matches the symptoms Briggs is experiencing, causes people to see multiples of objects, people, images and scenes, in addition to causing persistent headaches and difficulty sleeping. Briggs said she learned about the rare condition in her own research and continually suggested it to doctors, though because of its relative obscurity, she remarked many medical providers were unaware of it.

“If I look back, almost everything that has happened has been because I pushed for it, which is a little frustrating,” she said of her two-year odyssey consulting with medical providers. “At least I had neurologists that listened enough to help. I’ve seen stories from people where no one listens to them, no one believes them.”

Since her symptoms began, Briggs described seeing all images, people, objects and scenes as vertically blurred. Using a digital clock as example, Briggs' fuzzy vision causes her to see the numbers in several layers, a dizzying effect she has experienced for 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, barely reads and cannot paint to her typical standards due to her vision challenges and pain.

“It was really startling," Briggs said of the beginning of her vision struggles. "I have headaches always. I don’t remember not having headaches for about a year-and-a-half now.”

Raising funds for brain surgery

Briggs is seeking the funds to book appointments with Dr. Sunil Patel, chair of the neurosurgery department at the Medical University of South Carolina, one of a handful of surgeons in the world with experience 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’s hundreds of them. There’s just hundreds of them, it’s crazy.”

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A research article published by the American Academy of Ophthalmology about cerebral polyopia notes the disease was first reported in 1908 by Italian neurologist Dr. Giovanni Mingazzini.

“The extreme rarity of the disease, the similarities to other more common visual disturbances, and the variations in the presentation have hindered the ability to properly understand the etiology of the disease as well as find appropriate treatments,” the article states.

Patel, speaking in a video posted to the Medical University of South Carolina’s website, likened the size of the pineal gland to the tip of a person’s finger in the center of the brain and compared the pineal gland to the appendix.

“In brief, I would say that most people don’t know what the function of the pineal gland is in humans,” he said.

The neurosurgeon noted the pineal gland produces melatonin, but it’s uncertain whether the gland’s production of the hormone contributes to sleep-wake cycles.

“If you remove the gland, there is no objectively measurable, functional differences or changes in humans related to the pineal gland,” Patel said in the video.

Difficulty getting a diagnosis

As her symptoms progressively worsened starting two years ago, Briggs said numerous doctors she visited told her they were unable to diagnose her, let alone potentially operate.

Research she conducted led Briggs to connect with a neurologist in Alabama who had studied cerebral polyopia. With guidance from the neurologist, Briggs and her neurologist in Maine determined cerebral polyopia must be what she is experiencing.

Connecting with a support group for people battling masses in the pineal region, Briggs was pointed to three surgeons that have operated on masses, including Patel.

The South Berwick resident’s fundraiser, which has already raised over $14,000, was started because her insurance wouldn’t cover any prospective procedure performed by Patel. Though she can be added to her fiancé’s insurance by potentially marrying him earlier than anticipated, the fundraiser would cover the deductible and other necessary expenses, like flights to South Carolina and hotels.

Estimates for those expenses and upwards of three trips to South Carolina — one for patient intake, another for a consultation and possibly a third for surgery — brought Briggs to a $25,000 total.

In 2019, Briggs and her family set up a GoFundMe to assist them with bills to pay for her father’s cancer battle. He died in May 2020.

Briggs’ second go-around with the online crowdfunding platform comes at a time when her pain is so severe, she said, she won’t open her eyes until it passes.

“I’m not the most patient person, usually. This has made me a lot more patient. But waiting means I have to think about the surgery a lot longer, and I overthink things a lot,” she said.

If approved for a surgery to remove the mass in her pineal gland region, Briggs noted the procedure likely wouldn’t take place until at least the fall of 2023.

Donations are being accepted at gofundme.com/f/help-karen-briggs-get-brain-surgery.

This article originally appeared on Portsmouth Herald: South Berwick, ME woman fundraising for her own brain surgery