FND: Weakness FND: Gait Differential Patient story Organic Clues Patient Advocacy In the news Diagnostic Overshadowing Clinical Reasoning Unconfirmed Diagnosis

Diagnosed with FND at 13, Eight Years Later Doctors Found a Chiari Malformation and Spinal Cord Syrinx

Author profile image FND Nope Moderator
0 comments

In 2017, 13-year-old Daniele Gray woke up unable to walk. Doctors diagnosed her with Functional Neurological Disorder (FND), and she underwent physical therapy to relearn how to walk. Eight years later, an MRI revealed a significant structural abnormality at the base of her brain, followed by the discovery of a fluid-filled cavity in her spinal cord. She subsequently required neurosurgery.

Her story, published by PEOPLE on February 19, 2026, raises an obvious question: was the neurological condition eventually discovered in 2025 already present when she was diagnosed with FND as a child?


Eight years between diagnoses

Gray, from Cedar Falls, Iowa, was diagnosed with FND after suddenly losing her ability to walk in 2017. Following physical therapy, she gradually regained mobility and resumed her life. According to the report, she believed that episode was behind her until September 2025, when she began experiencing severe dizziness, sometimes while driving. Headaches, weakness and shooting nerve pain in her arms and legs followed.

Gray says her concerns were not being taken seriously. Having previously been diagnosed with FND, she was particularly determined not to have her new symptoms attributed to the same condition without further investigation.

"This time, I knew it wasn't Functional Neurological Disorder."

— Daniele Gray, speaking to PEOPLE

She pushed for a brain MRI. On October 20, 2025, the results revealed a Chiari I malformation, a structural condition in which part of the cerebellum extends downward through the opening at the base of the skull into the spinal canal.

Her MRI reportedly showed 20 mm of cerebellar tonsillar descent. For context, 5 mm is a commonly used imaging threshold for Chiari I malformation, although the extent of descent alone does not establish symptom severity. Twenty millimetres is nevertheless a substantial anatomical finding, not a vague or subjective complaint.

Gray recognised many of her longstanding symptoms when she began reading about the condition. Symptoms associated with Chiari I malformation can include headaches, dizziness, neck pain, numbness, weakness and problems with balance or walking. These overlap with symptoms that may be attributed to FND.

Her family doctor referred her to a neurologist, but the earliest appointment was reportedly in January. When she described continuing neck and shoulder pain, her doctor ordered an MRI of her cervical spine. That investigation revealed something else: a syrinx extending from C6 to T1.

A syrinx is a fluid-filled cavity within the spinal cord. This condition, known as syringomyelia, can damage spinal cord tissue and cause pain, weakness, sensory disturbances and progressive neurological impairment. Syringomyelia is a recognised complication of Chiari I malformation, although not every person with Chiari develops it.

The discovery changed her treatment pathway. Rather than waiting for her neurology appointment, Gray sought neurosurgical assessment and underwent decompression surgery on December 15, 2025. Her recovery was difficult. She spent five days in hospital, initially struggled with walking and stairs, and required a walker for approximately a month. She subsequently reported becoming more active and experiencing fewer symptoms.


What was happening in 2017?

The central unanswered question is not whether Gray had Chiari I malformation in 2025. Her imaging established that. The question is whether the abnormality was already present, and potentially symptomatic, when she suddenly lost the ability to walk eight years earlier.

Chiari I malformation is often developmental, meaning the anatomical abnormality may exist long before symptoms become obvious or a diagnosis is made. It can remain undetected for years. Syringomyelia can also develop or progress over time. Consequently, the discovery of these conditions in 2025 does not establish precisely what was happening in 2017, but it makes the original diagnostic investigation extremely relevant.

The PEOPLE article does not answer several important questions:

  • Was a brain MRI performed when Gray lost the ability to walk at age 13?
  • Was her cervical spine imaged at the time?
  • What positive clinical findings were used to establish the original FND diagnosis?
  • Were structural abnormalities of the brain, craniocervical junction or spinal cord adequately considered?
  • Could the Chiari malformation have contributed to her original walking difficulties?
  • When did the syrinx develop, and was there evidence of spinal cord involvement before 2025?

These are not minor details. They are precisely the information needed to determine whether the original diagnosis was justified or whether a structural neurological condition was overlooked.

There is another point worth making. Gray reportedly regained her ability to walk after physical therapy. That improvement does not prove the original problem was functional. Rehabilitation can improve mobility in patients with numerous neurological and musculoskeletal conditions. A successful rehabilitation outcome is not retrospective proof of the diagnosis that preceded it.

Equally, the later discovery of Chiari I malformation and syringomyelia does not, by itself, prove that either condition caused her inability to walk in 2017. The article does not provide the original clinical findings, imaging history or sufficient medical records to establish that connection.

What it does establish is that a young woman previously diagnosed with FND subsequently developed significant neurological symptoms, pushed for further investigation, and was found to have structural abnormalities serious enough to require neurosurgical treatment.


The danger of an existing diagnosis becoming the explanation for everything

Gray's experience illustrates why an existing diagnosis must never substitute for investigating new or worsening symptoms. In September 2025, she was experiencing dizziness, headaches, weakness and nerve pain. Those symptoms warranted clinical assessment on their own merits, regardless of what doctors had concluded when she was 13.

Her account also exposes a troubling practical reality: she describes having to push for the investigation that ultimately identified her Chiari malformation. Further spinal imaging then revealed a syrinx, fundamentally changing the urgency and direction of her care.

The fact that she had an FND diagnosis was not evidence that her subsequent neurological complaints were caused by FND. Nor would the absence of a previously identified structural explanation have demonstrated that no such explanation existed.

There is a difference between having no identified cause and having established that no relevant cause exists. That distinction matters enormously when a patient's symptoms can overlap with those of conditions affecting the brain and spinal cord.

Gray's story does not provide enough information to declare her childhood diagnosis a confirmed misdiagnosis. It provides more than enough reason to question whether the original investigation was complete, particularly given the nature of the abnormalities eventually discovered.

Eight years separated her initial loss of mobility from the discovery of a major structural neurological abnormality. Whether that represents eight years of missed disease remains unanswered. The medical records from 2017, not assumptions about FND, are what could settle the question.

Patients should not have to demonstrate extraordinary persistence before their neurological symptoms are investigated. A diagnostic label is not a lifetime exemption from looking for disease.

References