A South Carolina teacher experienced years of frustration as her persistent symptoms were dismissed by medical professionals, only to discover she had a serious neurological disorder. Shelli Gunnoe, 26, described the sensation of her condition as if her brain was ‘falling out’ of her head.

This year, Gunnoe was diagnosed with Chiari malformation after enduring over a decade of baffling symptoms. Initially, doctors reassured her that issues, such as headaches triggered by laughter, were insignificant and not a cause for concern.

Chiari malformation is a rare disorder that affects approximately 300,000 people in the United States, or roughly one in every 1,000. It occurs when the lower part of the brain extends into the spinal canal, creating pressure that disrupts nerve function and the normal flow of cerebrospinal fluid.

The condition can lead to a variety of symptoms, ranging from headaches that intensify with straining, neck pain, and balance difficulties, to severe cases featuring coordination or vision problems.

For Gunnoe, identifying the source of her health issues was a lengthy journey, spanning more than 14 years.

Over time, she began to notice additional symptoms, such as tingling sensations in her arms and fingers, episodes of nausea, difficulty tolerating heat, and moments where her vision would unexpectedly dim.

She recalled one incident at work when she became so dizzy and overwhelmed by heat that she collapsed in a restroom, saying she was ‘unable to get up’ until her fiancé arrived to take her home. 

That crisis finally led to a neurology referral and the MRI that revealed a 4mm Chiari malformation. Even then, doctors initially said surgery wasn’t needed. But Gunnoe’s symptoms kept worsening, as simple movements like bending or standing provoked dizziness or instability. 

Shelli Gunnoe, 26, from South Carolina, was diagnosed with a Chiari malformation after more than a decade of confusing symptoms

A follow-up MRI complicated matters further, as a neurologist suggested her symptoms more closely resembled pseudotumor cerebri, a condition where pressure inside the skull rises abnormally. 

This, along with enlarged brain ventricles (a network of fluid-filled cavities within the brain that produce, contain and circulate cerebrospinal fluid) and her earlier diagnosis of hydrocephalus, (a condition when there is too much fluid in the brain, causing swelling and pressure) hinted at a deeper issue. 

‘Deep down, I knew something wasn’t adding up,’ she said.

Doctors now believe some of her symptoms may trace all the way back to birth. Chiari malformation is usually present at birth (congenital), although symptoms may not appear until childhood or adulthood.

Gunnoe was delivered by emergency C-section because she was breech, ‘upright with my head positioned in my mother’s rib cage,’ she explained. 

She inhaled a large amount of amniotic fluid and initially needed NICU care. 

Although her parents hoped for a routine infancy afterward, she soon required a hip brace for developmental support. 

She was also ‘extremely irritable and only soothed by being held,’ and her parents worried her head looked unusually large. Despite their concerns, a neurologist dismissed the issue at the time.

Years later, in 2009, Gunnoe was taken to hospital for chronic migraines. CT and MRI scans revealed mild hydrocephalus, and she was treated with medication. 

Early on, doctors told Gunnoe that issues like laughter-triggered headaches were nothing to worry about

That crisis finally led to a neurology referral and the MRI that revealed a 4mm Chiari malformation, pictured here

Chiari malformation, which is a rare condition impacting around 300,000 Americans, causes the lower part of the brain to push down into the spinal canal

Throughout childhood and her teen years she fainted often and lived with intense fatigue and headaches. 

‘Doctors kept telling me it was my weight,’ she said. But after losing 50lbs, the symptoms persisted. In January 2022, immediately after standing up from a bike in a cycling class, she fainted again.

Her symptoms escalated in the years that followed: blurry vision, vertigo, crushing fatigue, and mornings when she felt ‘frozen and unable to wake.’ 

She described episodes that ‘didn’t feel normal for someone my age.’

When she finally received a clear diagnosis of Chiari malformation in November 2024, she felt both ‘relieved, but frustrated.’ 

A neurologist used a skull model to show how her cerebellar tonsils were being pulled downward into the opening at the base of her skull. 

‘He explained that mine are pushed down further than they should be, slipping through the opening where the spinal cord runs,’ she said. 

‘Because they’re squeezed into a space that’s too tight, they press on my spinal cord and disrupt the flow of cerebrospinal fluid.’ 

When that flow is slowed or blocked, she added, ‘it irritates the nerves and causes many of the symptoms I’ve been dealing with.’

Gunnoe was delivered by emergency C-section because she was breech, ‘upright with my head positioned in my mother’s rib cage,’ she explained

Throughout childhood and her teen years, Gunnoe fainted often and lived with intense fatigue and headaches

For now, Gunnoe is being closely monitored while her neurologist determines the best course of action. 

‘Because of my combination of Chiari, hydrocephalus history, enlarged ventricles, and possible pseudotumor, my case is still being evaluated,’ she said. 

While waiting, she manages her symptoms through pacing, careful activity choices and prioritizing rest and hydration. 

‘I’m still very much in the ‘watch and wait’ stage,’ she added.

Despite the uncertainty, she tries to live fully. She still experiences dizziness when standing, visual disturbances, sensory overload and difficulty tolerating certain movements. 

Simple tasks, looking upward, bending down or standing too quickly, can trigger symptoms instantly. 

Even so, she continues teaching full-time, creates online content and models, and is training, with thoughtful modifications, in hopes of participating in the Hyrox race, a global, indoor fitness competition that combines eight 0.62m runs with eight different functional fitness workout stations. 

‘It’s a strange balance,’ she said, ‘acknowledging the reality of a neurological condition while refusing to let it shrink my goals or identity.’

Her symptoms escalated in the years that followed: blurry vision, vertigo, crushing fatigue, and mornings when she felt ‘frozen and unable to wake’

Despite the uncertainty, Gunnoe tries to live fully. She is hopeful of participating in the Hyrox race: a global, indoor fitness competition that combines eight 1km runs with eight different functional fitness workout stations

Gunnoe hopes her story encourages others not to ignore their symptoms or allow them to be dismissed. 

‘Invisible illnesses don’t always look dramatic,’ she said. 

‘People see me lifting weights, teaching, modelling, smiling online, and they don’t see the hours I spend navigating dizziness, pressure or exhaustion behind the scenes.’

She wants to speak especially to women who feel overlooked.

She said: ‘You can advocate for yourself. You can ask for second opinions. And you can still chase big dreams while living with something hard.’ 

Her life, she insists, remains ‘full, meaningful and ambitious, not because my neurological issues disappeared, but because I’ve learned to move with them while still moving forward.’