Living with a Hidden Condition.
I suffer from a condition which isn’t really well understood by the medical profession, called cerebellar tonsillar ectopia.
This happens when the tonsils of the brain descend down through the foramen magnum. The natural opening at the base of the skull where the spinal cord passes.
In my case, the descent is between 7–14mm. Which leaves me struggling daily with chronic headaches, migraines, mobility and balance problems, dizziness, and more.
My Symptoms
Headaches: Often sharp at the back of my head, spreading down to the neck and shoulders. They worsen with coughing, sneezing, or straining.
Neck pain: Aching and stiffness that never quite goes away.
Balance issues: I live with daily clumsiness, falls, and unsteady gait .My zimmer frames and four-wheel walker are part of life.
Dizziness & vertigo: At least several times a week I feel the world spin.
Sensory changes: Pins and needles, tingling, and numbness in my hands, feet, and face.
Swallowing & speech difficulties: Food can feel stuck, and sometimes my words fail me mid-conversation slurred or simply stuck.
Vision changes: Blurred or double vision.
Sleep issues: Insomnia, breathlessness, possible sleep apnea made worse by COPD and asthma.
Eye & heart symptoms: Involuntary eye movements, narrowing blood vessels (noted by my optician), and occasional palpitations.
What We Know
The severity of symptoms varies some people who have a tonsillar descent and never know it.
It is rare: one study found only 0.77% of 22,000 people had it, and only 14% of those had symptoms. That’s 169 people out of the 22,000 who was discovered to have Cerebellar Tonsillar Ectopia.
It is usually diagnosed with MRI scans, often by accident. For me, it was discovered during the thick of COVID, after severe illness after the vaccine.
Treatment
For now, I am managed with pain relief and regular monitoring.
Many patients improve after Chiari decompression surgery. This is where bone at the back of the skull is removed. In turn this to make more space but it is not a cure.
Almost 80% of patients report improvements in headaches and neck pain after surgery.
Living With It.
Living with this condition means I rarely go out. Especially as I live in a first-floor flat and mobility is a challenge. Bath boards, kitchen chairs, and walking aids help me hold onto independence.
Yet, in many ways, it feels no different from what our ancestors lived through. When ailments had no names when dizziness, weakness, or visions were seen as the touch of gods or spirits.
What we now call neurology once was understood as omens, curses, or gifts.
My constant battle is not only medical, but spiritual too. a reminder that we live on the boundary between body and spirit, health and struggle.
Through the Eyes of the Ancients.
If someone like me had lived in Celtic or Roman Britain, this condition would have had no medical name. Instead, my symptoms would have been explained as signs of otherworldly touch.
Headaches and dizziness have been seen as visions, proof that the gods or ancestors were pressing close. Druids have taken it as a calling a sign that one foot already walked in the Other world.
Slurred speech or fainting spells could have been taken as possession, or the whispers of spirits breaking through the veil.
Unsteady gait and weakness have marked me as cursed, chosen, or touched by the fae. In some cultures, those who stumbled between steps were believed to be walking between realms.
Even the constant pain is woven into myth not as weakness. But as sacrifice, the price for carrying sacred insight.
The Romans, more pragmatic, have marked me as “unfit” or even “mad.” But to the Celts, with their deep reverence for seers and dreamers, I would not have been dismissed. Instead, I would have been guided into a priestly or prophetic role the one who hears beyond the ordinary.
So while the modern world gives my suffering a clinical name cerebellar tonsillar ectopia. The ancient world has given me something different: purpose.
Authors Note.
I feel it is important to share this not only as part of my story. But to raise awareness of a condition that is still little known and poorly understood.
Matters of the mind whether it is mental illness, cerebellar tonsillar ectopia, or functional neurological disorders.
stay vast, mysterious, and too often overlooked. Research and funding still lag far behind the need.
By speaking openly, I hope to bring light to these hidden struggles. To remind others who walk this path that they are not alone.
Thank you for reading.
© StormborneLore Emma Hewitt, 2025. All rights reserved.
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