It took doctors 14 years to diagnose what is wrong with Shelli, 26
A teacher who had her symptoms dismissed by doctors was eventually diagnosed with a life-changing condition which is causing her brain to “fall out”. Shelli Gunnoe, 26, was diagnosed with a Chiari malformation after more than a decade of confusing symptoms that were dismissed as other issues – including headaches triggered by laughter.
A Chiari malformation is where the lower part of the brain pushes down into the spinal canal, essentially “falling out” of its normal spot in the skull. But it took more than 14 years to secure a diagnosis – and Shelli started experiencing a range of symptoms, including tingling in her fingers and arms, nausea, heat intolerance and vision-fading episodes.
“One episode left me in the restroom unable to get up due to dizziness and heat, eventually needing my fiancé to pick me up from work,” said Shelli, a second-grade teacher from South Carolina, US.
That particular episode led to a neurology referral and an MRI that revealed a 4mm Chiari malformation. While doctors said surgery wasn’t necessary, Shelli’s symptoms worsened to the point that simple movements like standing up and bending down became difficult.
A follow-up MRI complicated things even more for Shelli, when a neurologist said her symptoms were more consistent with pseudo-tumour cerebri, possibly linked to enlarged ventricles and her history of hydrocephalus. They believe her current health struggles may date back to her birth.
Shelli said: “I was born via emergency C-section due to being breech – essentially upright, with my head positioned in my mother’s rib cage. I had swallowed a significant amount of amniotic fluid, and after NICU discharge, my parents thought they were settling into normal life with a newborn – but by six months old, I needed a hip brace for developmental support.”
Shelli was “extremely irritable and only soothed by being held” as an infant and was taken to a neurologist as her parents thought her head size appeared to be abnormally large. At the time, doctors dismissed the concerns, and no treatment was given.
In 2009, Shelli was taken to the hospital for chronic migraines, and CT and MRI scans revealed mild hydrocephalus – a buildup of cerebrospinal fluid in the brain – which was treated with medication. Throughout childhood and adolescence, she often fainted and struggled with “overwhelming” fatigue and headaches – which she claims doctors put down to her weight.
But after losing 50lbs, she continued to experience the symptoms, culminating in her fainting after a cycling class in January 2022. In January 2022, after losing 50lbs and taking a cycling class, Shelli fainted immediately after standing up from the bike.
She said: “Deep down, I knew something wasn’t adding up. “Over time, my symptoms intensified: blurry vision, dizziness, extreme fatigue, mornings where I felt frozen and unable to wake, and episodes that didn’t feel normal for someone my age.”
Shelli was “relieved, but frustrated” to finally get a diagnosis in November 2024, with a doctor showing her a model of a skull to illustrate her condition. She said: “He explained that at the bottom of our brain, there are parts called the cerebellar tonsils, and that mine are pushed down further than they should be, and are slipping through the opening at the base of my skull where the spinal cord runs.
“Because they are squeezed into a space that is too tight, they press on my spinal cord and disrupt the flow of cerebrospinal fluid, which is the fluid that is supposed to move freely around my brain and spine. When that flow gets blocked or slowed down, it irritates the nerves and causes many of the symptoms I have been dealing with.
“The consequences of this can show up in a lot of different ways – for me, it has meant headaches, neck pain, dizziness, numbness, and other nerve symptoms that can be hard to explain.”
Shelli is currently being monitored while awaiting a plan from her neurologist. She said: “Because of my combination of Chiari, hydrocephalus history, enlarged ventricles, and possible pseudotumor, my case is still being evaluated.
“In the meantime, I manage symptoms through lifestyle adjustments, careful activity choices, and prioritising rest and hydration. But I’m still very much in the ‘watch and wait’ stage until more definitive guidance is provided.”
Now, Shelli said she’s trying to live her life to the fullest while dealing with her ongoing symptoms.She added: “I’m doing my best to live fully despite the uncertainty. I still deal with dizziness when standing, difficulty tolerating certain movements, fatigue, visual disturbances, and sensory overload.
“Simple daily tasks, like looking upward, bending down, or moving quickly from sitting to standing, can trigger symptoms instantaneously.”
However, Shelli is continuing to teach full-time, as well as create content, model and train to potentially participate in the HYROX race, with modifications that allow her to stay active without pushing herself into dangerous territory. She added: “It’s a strange balance – acknowledging the reality of a neurological condition while refusing to let it shrink my goals or identity.
“If there’s anything I want others to know, it’s that invisible illnesses don’t always look dramatic. 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.
“I also want to be a voice for other women – especially plus-size women, women with chronic conditions, and anyone juggling multiple roles – who feel like their health struggles are overlooked or minimised. You can advocate for yourself, you can ask for second opinions, and you can still chase big dreams while living with something hard.
“My life is full, meaningful, and ambitious – not because my neurological issues disappeared, but because I’ve learned to move with them while still moving forward.”
