She Discovered Her Brain Was Falling Out Of The Back Of Her Head, Then Got Diagnosed With A Rare Condition
Last summer, Michelle Groeller (@dayswithmichelle) experienced a persistent headache and sensitivity at the back of her head for over six weeks.
So, she got some medical tests done to search for answers. She found out that she had a rare condition that affects less than one in 1,000 people.
In a post shared to TikTok, the 17-year-old included a copy of her brain scan accompanied with text explaining that the orthopedic discovered her brain was falling out of the back of her head.
Michelle was diagnosed with Chiari malformation, which occurs when the cerebellar tonsils—the lower part of the brain—extend into the spinal canal. The condition can lead to debilitating symptoms like neck pain, headaches, and neurological issues.
A month before the diagnosis, Michelle was diagnosed with Ehlers-Danlos syndrome (EDS), a group of rare genetic disorders that affect connective tissues.
According to Dr. Deepali Misra-Sharp, a general practitioner at Lordswood House Medical Practice in Birmingham, England, abnormalities in connective tissues can cause increased joint mobility and instability, which can affect the craniocervical junction, where the skull meets the spine.
The weakened connective tissues due to EDS may contribute to the development of Chiari malformations. Since she was young, Michelle has always been very clumsy, but she and her mother chalked that up to simply not being a graceful person.
As she grew older, she began suffering from severe pain in her joints and had to get knee surgery at 16 years old. Soon after, she developed severe hip pain.
She learned that these issues were caused by EDS. More symptoms continued to emerge, such as numbness throughout her whole body and fluid discharge from her ears and nose.
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A CAT scan revealed that the right side of her brain was slipping downward, leading to a diagnosis of Chiari malformation. The fluid was identified as cerebrospinal fluid, a substance that protects the brain and spinal cord.
Many medical professionals are unfamiliar with Chiari malformation because of how rare it is, especially in young patients. So, that’s why Michelle’s symptoms were overlooked for as long as they were.
Now, Michelle is using her platform to share her story and raise awareness of Chiari malformation. She also encourages others to trust their instincts and to advocate for themselves.
More About:Human Interest
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