Woman Nearly Suffers ‘Internal Decapitation’ After Being Dismissed by Doctors for 20 Years: ‘I Was Being Treated Like a Joke’

Woman Escapes Decades of Misdiagnosis to Avoid ‘Brutal’ Internal Decapitation

Katlyn Brooks, a Michigan resident and mother of two, endured over 20 years of excruciating symptoms that were consistently dismissed by medical professionals as manifestations of anxiety and depression. Now, at 28 years old, Brooks faced a life-threatening condition that could have led to internal decapitation due to the delayed diagnosis of her rare illness.

Initially, doctors attributed her persistent vomiting, dizziness, and extreme fatigue to mental health issues, prescribing antidepressants and dismissing her physical struggles as psychological disturbances. Despite her persistent pleas for medical attention, it wasn’t until Brooks experienced severe malnutrition and drastic weight loss, culminating in hospitalization at a mere 89 pounds, that her condition was revealed.

In April 2024, after years of suffering, Brooks was finally diagnosed with Hypermobile Ehlers-Danlos syndrome (hEDS), a genetic disorder impacting connective tissues, resulting in chronic pain, joint hypermobility, and fragile skin. The diagnosis also unveiled a shocking revelation that her ligaments connecting the skull and spine had significantly weakened, predisposing her to craniocervical instability (CCI) and the peril of internal decapitation with any abrupt movement.

Acknowledging the urgency and complexity of the situation, medical professionals suggested a risky surgical procedure to fuse her skull bones, averting the looming threat of disaster. However, the local medical community was reticent to conduct the intricate surgery. Brooks and her family embarked on a relentless search for a specialist capable of performing the life-saving operation.

Following months of uncertainty, a glimmer of hope emerged when a neurosurgeon at the University of Cincinnati agreed to undertake the critical intervention. In February 2025, Brooks successfully underwent the intricate procedure. Grateful for the support received through a fundraising campaign, she reflected on the arduous journey, expressing relief at having her physical condition stabilised following the surgery.

Although the operation was deemed successful, Brooks faced additional complications post-surgery, including a tethered spinal cord impeding her mobility and necessitating further corrective intervention. Scheduled for January 2026, the upcoming procedure aims to alleviate the spinal cord tethering, enhance mobility, and prevent consequent neurological impairment.

Despite the challenges and setbacks, Brooks remains optimistic about her recovery and eventual restoration of independence. She strives to regain lost weight and gradually regain strength while awaiting the forthcoming surgery that offers the promise of a better quality of life. Brooks’ resilience and unwavering spirit in the face of adversity serve as a testament to her courage and determination throughout this harrowing medical ordeal.

As Brooks continues her journey towards recovery, her story stands as a poignant reminder of the importance of timely and accurate medical diagnoses, highlighting the critical significance of advocating for one’s health and seeking appropriate medical attention. Her unwavering resolve and the unwavering support of her loved ones have been instrumental in navigating the challenges posed by her rare condition, underscoring the resilience of the human spirit in the face of adversity.