Teen Suffers 48-Day Migraine, Then Discovers Her Brain Is 'Falling Out'

Michelle Groeller experienced a relentless headache last summer that lasted over six weeks. Seeking answers, she underwent medical tests, revealing a rare condition that affects less than one in 1,000 people. In her words, shared on TikTok (@dayswithmichelle): "Having horrible headaches every day and sensitivity at the back of my head." She accompanied these words with a copy of her brain scan and text explaining that the orthopedic discovered her "brain was falling out of the back" of her head. The TikTok video documenting her experience quickly went viral, garnering 1.9 million views. Groeller, 17, and her mother, Allyson Moulton, 37, from Atlanta, spoke to Newsweek about the life-altering diagnosis of Chiari malformation. "She had a continuous migraine for 48 days," Moulton said. "It never stopped."

What is Chiari Malformation?

Chiari malformation occurs when the lower part of the brain, known as the cerebellar tonsils, extends into the spinal canal. This condition can cause debilitating symptoms, including headaches, neck pain, and neurological issues. Dr. Deepali Misra-Sharp, a general practitioner and partner at Lordswood House Medical Practice in Birmingham, England, explained: "The treatment for Chiari malformation often involves surgical intervention. The primary surgical procedure is craniocervical decompression, which aims to create more space for the cerebellum and relieve pressure on the spinal cord. This surgery can alleviate symptoms like headaches and improve the flow of cerebrospinal fluid." A month before the diagnosis, in June 2024, Groeller was diagnosed with Ehlers-Danlos syndrome (EDS)—a group of rare genetic disorders affecting connective tissues. Dr. Misra-Sharp said: "In individuals with EDS, particularly those with hypermobile EDS (hEDS), the connective tissue abnormalities can lead to increased joint mobility and instability. This instability may affect the craniocervical junction—the area where the skull meets the spine—potentially contributing to the development of Chiari malformations. The weakened connective tissues in EDS might allow the cerebellar tonsils to herniate into the spinal canal more easily, linking the two conditions."

A Lifetime of Missed Signs

Groeller's medical challenges began long before the EDS diagnosis. Moulton told Newsweek that Groeller is an extremely smart girl, but she has always been clumsy. She said: "We brushed it off and said she isn't graceful." "At eight years old, she broke her wrist in what was dismissed as a 'perfect fall,'" Moulton said. "By 10, she had hip pain that her pediatrician labeled as growing pains. No tests were done, and her complaints were downplayed for years." Later, while running track, Groeller developed knee pain that required surgery at 16. The procedure revealed severe and unexpected damage, necessitating reconstruction. "I had a gut feeling that something was wrong," Moulton said. Shortly after, severe hip pain prompted a second opinion and X-rays revealed her hip joint was bone-on-bone. These issues, now understood as symptoms of EDS, were caused by the disorder's impact on connective tissues, leading to joint instability and degeneration over time. "It was missed her whole life," Moulton said. "She is now a candidate for a hip replacement at just 17 years old."

Chiari Malformation Diagnosis

Groeller continued seeking answers and additional symptoms emerged, including numbness and fluid discharge from her nose and ears. A CAT scan revealed a critical complication: the right side of her brain was slipping downward, leading to a diagnosis of Chiari malformation in July. Doctors also identified the fluid as cerebrospinal fluid (CSF), a protective substance that cushions the brain and spinal cord. A leak occurs when this fluid diminishes, leaving the brain and spinal cord vulnerable. "She has decreased spinal fluid, which cushions the brain," Moulton said. "She's had this ticking bomb in her body but it has been ignored for her whole life."

The Challenges of Diagnosis

Renee Roth Powers, a Doctor of Physical Therapy in Rockville, Maryland, told Newsweek that not all medical professionals are familiar with Chiari malformation. "It is rare many practitioners may have never seen this issue in many years of practice—so it will not be considered as a possible diagnosis," she said. "Most medical appointments focus on solving a single problem rather than looking for an overall cause that explains multiple symptoms. For young patients, doctors often consider more common issues like vision problems or posture, missing underlying conditions like Chiari malformation."

Faith and Resilience

Through her struggles, Groeller credits her faith and Christian community with giving her strength. "Praying has been the only thing that has helped me mentally," she told Newsweek. "The support from my church has been incredible." Groeller has missed major milestones, such as her senior year, driving and social events with friends. Despite these challenges, she remains positive and uses her platform to advocate for awareness. "I shared my story online to poke fun at the condition—I never expected it to blow up," she said.

Advocacy and Hope

Groeller now encourages others to trust their instincts and seek medical advice if something feels wrong. "As a mother, this journey has been both heartbreaking and frustrating," Moulton said. "But I'm incredibly proud of how Michelle has learned to advocate for herself. She inspires me daily with her strength and determination." Is there a health issue that's worrying you? Let us know via health@newsweek.com. We can ask experts for advice, and your story could be featured on Newsweek.