Chiari malformation occurs when part of the skull is abnormally small or misshapen, forcing brain tissue downward into the spinal canal
Daniele Gray
NEED TO KNOW
- Daniele Gray of Cedar Falls, Iowa, woke up one day unable to walk
- Doctors initially diagnosed her with Functional Neurological Disorder
- For years, she believed the episode was behind her — until September 2025, when she got a new diagnosis
In 2017, Daniele Gray woke up to a reality she couldn’t explain: she couldn’t walk.
Doctors diagnosed the Cedar Falls, Iowa, resident — then 13 — with Functional Neurological Disorder, a condition that affects movement and sensory function. She underwent physical therapy and, over time, relearned how to walk. Eventually, life stabilized.
For years, she believed the episode was behind her. Then, in September 2025, everything shifted again. Gray began experiencing sudden waves of dizziness — sometimes while driving — leaving her disoriented and afraid she wouldn’t make it home safely.
“My gut knew something was wrong, but no doctor was taking me seriously,” she tells PEOPLE exclusively.
Daniele Gray
The dizziness was followed by severe headaches, weakness and nerve pain shooting through her arms and legs.
“This time, I knew it wasn’t Functional Neurological Disorder,” she says.
Now 20, Gray pushed for a brain MRI, despite being warned that it may take several days for the results to come in. At around 9 p.m. on Oct. 20, she received an email notification: her results were in.
The scan revealed Chiari 1 malformation.
“I immediately Googled it,” she says. “Finding out that my brain was essentially being pushed out of my skull had me shaking.”
@thedanielediaries
EDIT: I also forgot to mention that she told me my referral for a neurologist was denied (bc she was done dealing with me) and I actually called the neurologist office to confirm that and they said it hadnt even been reviewed yet. Girl straight up lied to my face to get me to shut up… anyways My 2025 medical journey! I love watching these types of videos while I’m getting ready so enjoy this 15 minute video of me yapping!!! This took me so long to edit idk how YouTubers don’t lose their mind editing videos every day I would go crazyyyy #chronicillness #chiarimalformation #storytime #brainsurgery #medicaljourney Nails: @Olive & June Drink: @OLIPOP
♬ original sound – daniele grace 🌷
Chiari malformation occurs when part of the skull is abnormally small or misshapen, forcing brain tissue downward into the spinal canal, according to the Mayo Clinic. Symptoms can include debilitating headaches, neck pain, dizziness, numbness and difficulty walking.
Gray’s MRI showed a 20-millimeter descent of her cerebellum into the foramen magnum — four times the five millimeters typically required for diagnosis. Her case was considered severe.
“I remember sitting on my mom’s bed reading the symptoms and having an ‘aha’ moment,” she says. “I had almost every single one. Most of them I thought were normal, and they weren’t.”
@thedanielediaries
@xo.sadiya !! Here’s another rough medical neglect story.. #storytime #chronicillness #chiarimalformation #medicaljourney #makeup
♬ original sound – daniele grace 🌷
In the days after her diagnosis, Gray turned to TikTok, searching for others who might be living with the same condition. She found very little.
“It’s rare, and it’s not talked about enough,” she says.
That absence would later shape her recovery. First, she had to fight for treatment.
After her diagnosis, her family doctor referred her to a neurologist, but the earliest appointment wasn’t until January. Waiting months felt unbearable. When she mentioned ongoing neck and shoulder pain, her doctor ordered a cervical spine MRI — a decision that proved critical.
The scan revealed a syrinx, a fluid-filled cyst in her spinal cord from C6 to T1, a serious complication that can cause permanent damage if untreated.
“Once we saw that, everything changed,” she says.
Daniele Gray
Instead of waiting for a neurologist, Gray pushed to see a neurosurgeon who she says "actually listened." With the syrinx present, surgery wasn’t optional, and her decompression surgery was scheduled for Dec. 15.
“I remember being wheeled into the operating room,” she says. “And then I woke up.”
Daniele Gray
She spent five days in the hospital. Her neck was so stiff she could barely turn her head. Walking felt terrifying; at one point, she had a panic attack while attempting stairs.
For a month, she relied on a walker and needed help with everyday tasks. She recalls how her parents supported her financially while she was out of work, her boss held her job, coworkers donated PTO and friends checked in daily.
“I knew it was going to be a crazy journey,” she says. “But I wasn’t alone.”
Doctors had warned her that outcomes vary — patients can feel better, worse or the same. Months later, Gray says she’s steadily improving, despite the occasional setbacks.
“I’m more active. I have fewer symptoms,” she says. “I’m hoping I continue getting better and better.”
As she healed, Gray began documenting her experience on TikTok — explaining her diagnosis, breaking down symptoms and sharing recovery updates. The response was almost immediate. Her videos began reaching thousands of viewers, many of whom saw their own stories reflected in hers.
Messages poured in from people who said they, too, had felt dismissed by doctors — or hadn’t recognized their symptoms until watching her content.
Daniele Gray
“I immediately knew from the first five seconds that it was Chiari malformation,” one user wrote. “You’re the first creator I’ve come across that’s talked about this.”
Another commented, “I listened to every single minute of this. I’m so proud of you for staying true to your intuition throughout this long process.”
Others shared similar frustrations about being told they were overreacting or “fine” despite ongoing pain.
For Gray, the outpouring of support reframed her experience.
“I realized I wasn’t just sharing for me,” she says. “I was sharing so other people wouldn’t feel alone.”
@thedanielediaries
cord so long i can just walk around my room with this thang on ya gotta love it here def reccomend it i can’t believe im 2 months today, time flies so fast but so slow at the time. so thankful to be here and spread the word on chiari malformation you guys are the best 🤍 #chiarimalformation #chronicillness #chronicallyill #brainsurgery #chronicpain
♬ Adored – Royel Otis
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Looking forward, Gray plans to continue to share updates about her health journey and recovery. But above all, she hopes her story encourages others to advocate for themselves.
“A doctor doesn’t necessarily know everything,” she says. “If you feel like something isn’t right, push for answers. Nobody should have to live in pain without them.”
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