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

A Michigan woman says she spent nearly two decades searching for answers before learning that a rare condition had left her at risk of internal decapitation.

Katlyn Brooks, a 28-year-old mother of two, grew up with constant vomiting, dizziness and extreme fatigue. For years, however, her symptoms were brushed off as mental health issues. She was prescribed an antidepressant at age 9 and told that panic attacks, anxiety and depression were behind what she was feeling.

By her 20s, Brooks’ health had sharply declined. She repeatedly begged doctors to take her symptoms seriously, but after her sister died in 2020 and her daughter was stillborn in 2022, her worsening condition was once again blamed on depression.

“My physical symptoms were still all too real and debilitating,” she told the Daily Mail. “My pain was dismissed, I was treated as a drug-seeking patient, and I started to question my own mental health. I was being treated like a joke.”

In April 2024, her condition took another turn. She developed significant digestive issues, vomited more often and began losing weight rapidly. She was eventually hospitalized for severe malnutrition, weighing just 89 lbs.

“I was just skin and bone,” she recalled.

During that hospital stay, she finally got an explanation for what she had been experiencing for 20 years: doctors diagnosed her with Hypermobile Ehlers-Danlos syndrome (hEDS).

Ehlers-Danlos syndrome is a group of inherited disorders that affect the body’s connective tissues — especially the skin, joints and blood vessels, according to the Mayo Clinic. Common symptoms include chronic pain, overly flexible joints and stretchy, fragile skin. The most common type is hEDS, and people with this diagnosis often struggle with frequent joint pain and dislocations. Many also live with chronic fatigue, headaches and gastrointestinal problems.

Along with the hEDS diagnosis, doctors made a far more alarming discovery. MRI scans showed that Brooks’ neck had undergone two decades of “wear and tear” because her condition had gone untreated.

The ligaments connecting her skull and spine had become dangerously loose, a condition known as craniocervical instability (CCI). Doctors warned her that any sudden movement could cause internal decapitation.

“It’s like a bobblehead,” she said. “You can literally feel how loose your head is. It just kind of flops. I can feel the back of my head resting on my upper back.”

Internal decapitation occurs when the ligaments and/or bony structures that connect the skull to the spine are damaged, according to a paper published in the World Journal of Orthopedics. It is usually fatal, with roughly 90% of cases leading to immediate death.

Brooks was immediately fitted with a neck brace and told that she needed an extremely complex surgery to fuse unstable bones and stabilize her skull.

Her parents wrote in a GoFundMe post that her condition “left her in a critical and sinister position where she must undergo a life-saving operation to prevent her neck from collapsing and crushing her spinal cord, jugular veins, and nervous system, all of which are an immediate death sentence.”

“Katlyn’s life now has a price tag on it as well as an unknown expiration date,” they added.

Despite the urgency, Brooks said specialists in Michigan were unwilling to take on the high-risk operation.

“I’ve been dismissed by pretty much every neurologist and neurosurgeon within my area, and that’s even counting going three hours from my home and more,” she said. “We traveled just about everywhere in Michigan.”

On Christmas Eve 2024, her family finally got a breakthrough: they were connected with a neurosurgeon at the University of Cincinnati who was willing to operate “as soon as possible.”

“I was cutting it too close to having spontaneous internal decapitation,” Brooks said. “They were like, ‘We want you to have surgery almost immediately.’ Thank god I answered [the call].”

She underwent the surgery in February 2025, and it was a success.

“I officially have my head screwed on right (maybe not mentally but physically for sure),” she wrote in a March update on GoFundMe. “The process was brutal. I would give birth 10x over before going through this again but without you all, I wouldn’t be here.”

Since the operation, Brooks has developed a tethered spinal cord, which has limited her mobility and largely confined her to her home. She is scheduled for corrective surgery in January 2026, a procedure that is expected to “release” the spinal cord, improve her movement and help prevent further neurological damage.

In the meantime, she told the Daily Mail that she is doing better overall and slowly gaining back the weight she lost. Her hope now is that the upcoming surgery will be her last — and that it will finally allow her to reclaim her independence.