Tyson Bottenus is sharing his harrowing experience with a toxic fungal infection in the brain that is so rare only about 120 cases have been confirmed worldwide since its discovery in 1911.
He believes he contracted the “black mold” after a trip to Costa Rica in 2018 when he fell from his bike and scraped his elbow.
Since 2018, Tyson Bottenus Has Experienced Terrible Headaches, Facial Palsy, and Had to Reteach Himself the Most Basic of Functions.
“I’ve fought this fungal infection with ten brain surgeries, five spinal taps, and two sets of cyborg-like tubes implanted to connect my brain’s ventricles to my abdomen,” Bottenus wrote of his experience for Buzzfeed News. “I’ve had a stroke, and with it serious impairments that have required me to relearn how to walk, talk, and read.”
Though the infection is not actually black mold, it is called this because it appears black on MRI scans and contains melanin. After many visits to various doctors, many of which could not explain his strange symptoms, he finally found out that Cladophialophora bantiana was growing in his brain.
Bottenus, 35, explained that it was “great to figure that out, but it’s not great that I have fungus in my head.”
The discovery was made by a neurosurgeon during his third biopsy eight months after his symptoms began. Before the diagnosis, Bottenus had been tested for brain cancer, Lyme disease, cysticercosis, HIV, tuberculosis, and other possible causes. The neurosurgeon who discovered it had expected to find cancer. But, that was not the case.
While Bottenus was under anesthesia, the surgeon called Bottenus’ girlfriend, Liza from the operating room, saying that “she could literally see a dark fungus with her naked eye. A far cry from cancer she had been determined to find,” he wrote.
After the diagnosis, Bottenus and doctors were certain he contracted the tropical fungus when he traveled to Costa Rica. What they did not know was how to treat it because it is so rare.
The fungus caused abscesses on Bottenus’ brain which results in swelling and fluid building up in the skull. In 2020, those factors resulted in the stroke that severely debilitated him. Following the incident, doctors told him that the pressure in his brain was fifteen times the normal pressure.
It’s been a lonely road for Bottenus who is a victim of this extremely rare condition. “I can’t escape the uncertainty around my future, but no one can,” he wrote. “I just have to learn to live with it.”
Just a few months ago, doctors realized that the antifungal medication he had been on for four years was not penetrating the brain making it ineffective at treating the infection and a new treatment was started. Bottenus was told that his immune system alone had kept him alive over the last few years.
“While the journey to reclaiming normalcy has been fraught, it has taught me how to accept uncertainty,” he shared along with his belief that he will survive for many years.
Despite the infection “not making any sense” Bottenus has come to peace with the uncertainty.
“My future remains murky, as soft and dusky grayish-brown as the fungus, Cladophialophora bantiana, itself.“
Since the diagnosis, he has tried to finish some of his life goals including pursuing his master’s in marine affairs at the University of Rhode Island.
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“It had been over a decade since I had completed my undergraduate degree there, and I reasoned that it would make sense for me to pursue this opportunity while I waited for my medical condition to become more stable,” he explained.
He finished his first year with a 3.7 GPA and he is currently working on a thesis “about offshore wind.”
While this slightly terrifying medical journey is far from over, it’s inspiring that Bottenus has not let it defeat him and that he’s pushing himself and achieving some of his many goals in life.
Andrew is an Assistant Editor for Mamas Uncut with over ten years of experience as a writer in the creative, marketing, and blogging spaces. After studying Film and Art History, he developed a passion for telling stories in a variety of mediums. Obsessively making lists, reporting celebrity news, and diving into emerging pop cultural topics are a few of his interests.
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