Michelle Groeller’s summer of 2024 was marred by a relentless headache that persisted for over six weeks. This agonizing experience propelled her to seek medical attention, ultimately leading to a rare diagnosis: Chiari malformation, a condition affecting less than one in 1,000 individuals. Groeller, a 17-year-old from Atlanta, Georgia, took to TikTok to share her ordeal, posting a brain scan image and explaining that her brain was essentially “falling out” of the back of her head. The video quickly gained traction, amassing nearly two million views and sparking a conversation about the often-overlooked condition. Groeller and her mother, Alysson Moulton, subsequently shared their story with Newsweek, shedding light on the challenges of living with Chiari malformation and the long road that led to its discovery.
Chiari malformation occurs when the cerebellar tonsils, located at the lower part of the brain, protrude into the spinal canal. This displacement can cause a range of debilitating symptoms, including persistent headaches, neck pain, and various neurological issues. Groeller’s 48-day headache, as described by her mother, was a key indicator of the underlying problem. Treatment for Chiari malformation often involves a surgical procedure called craniocervical decompression, which aims to create more space within the skull and relieve pressure on the spinal cord and cerebellar tonsils. This procedure can significantly alleviate symptoms and improve the flow of cerebrospinal fluid, the vital fluid that cushions the brain and spinal cord. The rarity of the condition often leads to delayed diagnoses, as many medical professionals are unfamiliar with its presentation and symptoms.
Adding to the complexity of Groeller’s case, just a month prior to the Chiari diagnosis, she was diagnosed with Ehlers-Danlos syndrome (EDS), a group of genetic disorders affecting connective tissues. EDS can manifest in various ways, often causing joint hypermobility, instability, and a predisposition to injuries. The connection between EDS and Chiari malformation lies in the weakened connective tissues, which can contribute to instability at the craniocervical junction (where the skull meets the spine), allowing the cerebellar tonsils to herniate more easily. This underlying connective tissue disorder provided a crucial piece of the puzzle in understanding Groeller’s medical history.
Groeller’s journey with undiagnosed medical conditions began long before the EDS and Chiari diagnoses. Throughout her childhood, she experienced a series of seemingly unrelated issues, including a broken wrist at age eight, chronic hip pain dismissed as “growing pains,” and knee problems requiring surgery at 16. These events, initially attributed to clumsiness or normal growth patterns, were later recognized as potential manifestations of EDS. The delayed diagnosis meant that Groeller endured years of pain and underwent unnecessary procedures, highlighting the importance of thorough medical investigations and considering underlying connective tissue disorders when evaluating such symptoms.
The eventual diagnosis of Chiari malformation came after Groeller experienced additional symptoms, including numbness and the unsettling leakage of cerebrospinal fluid from her nose and ears. A CAT scan revealed the downward displacement of the right side of her brain, confirming the Chiari malformation. The CSF leak indicated a further complication, highlighting the potential for serious neurological consequences if the condition remains untreated. Groeller’s case underscores the critical need for medical professionals to consider rare conditions and investigate thoroughly when presented with a constellation of unusual symptoms, especially in the context of an existing connective tissue disorder like EDS.
Groeller’s experience exemplifies the challenges faced by individuals with rare and often misunderstood conditions. The delayed diagnosis of both EDS and Chiari malformation underscores the importance of patient advocacy and seeking second opinions when necessary. Throughout her ordeal, Groeller has found solace in her faith and the support of her church community, drawing strength and resilience from these sources. She has chosen to share her story publicly, not only to raise awareness about Chiari malformation and EDS, but also to encourage others to trust their instincts and advocate for their own health. Her story serves as a powerful reminder that sometimes, the most impactful diagnoses come from persistent questioning and the refusal to accept easy answers.
