Hello, I'm Stephen, with a PH—the creator of Jotted.

This journal was born during a deeply personal turning point. After being diagnosed with Chiari Malformation—a neurological condition where the brain presses into the spinal canal, causing debilitating symptoms, my day-to-day life changed. I quit wedding photography, stopped traveling as much as I used to and even simple routines became uphill battles. So the necessity to fund surgery pushed me to finally act on a vision and dream I had been too afraid to act on before. 

Journaling became a lifeline. But over time, using scattered methods—or trying to design my own layouts—left me overwhelmed. Even as a creative, I’d lose the plot. I’d tire out, and the very tool that was supposed to bring focus started to drain it.

So I built what I needed: a minimal journal with just enough structure to guide—but the space to make it ones own.

Whether you're a list-maker, a tracker, a note-dumper, or a free-form thinker—Jotted lets you write your own rhythm. 

It began with my story. Now it's here for yours.

For more information on Chiari Malformation click HERE

DISCLAIMER:
The information provided on this page is intended for general educational purposes only and is based on publicly available medical resources as well as the personal experiences of Stephen, the founder of JOTTED. While care has been taken to ensure accuracy and clarity, Chiari malformation is a highly complex and individualized condition. Symptoms, severity, and treatment options can vary significantly from person to person.

This content is not a substitute for professional medical advice, diagnosis, or treatment. Always consult with your healthcare providers or qualified specialists to address your unique health situation. Use this page as a starting point for understanding—not a definitive guide.

🧠 What Is Chiari Malformation?

Chiari malformation is a neurological condition where the lower part of the brain (the cerebellar tonsils) descends abnormally into the spinal canal through the base of the skull (foramen magnum), pressing on the brainstem and disrupting cerebrospinal fluid (CSF) flow.

Types & Diagnosis

Type I (most common in adults): characterized by tonsils that descend 3–5 mm or more. But the severity of symptoms isn’t always linked to how far it descends—blockage of CSF flow often matters more than millimeters.

Other forms (Types II–IV) are rarer and often involve additional structural abnormalities and more severe symptoms.

Diagnosis relies on MRI scans, neurological exams, patient history—and sometimes advanced flow imaging (cine‐MRI) to see CSF movement.

Common Symptoms

Chiari malformation affects each person differently, but frequently reported issues include:

• Chronic headaches (often at the back of the head, especially after coughing or straining)
• Neck pain, numbness or tingling in hands and feet, muscle weakness, spasms, balance issues, and coordination problems
• Visual disturbances (blurring, light sensitivity), dizziness, and trouble swallowing
• Cardiovascular and respiratory dysregulation, including irregular heartbeat, apnea, or breath control issues
• In severe cases, additional complications like syringomyelia (spinal cord cysts), hydrocephalus, and neurological deficits may occur

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Causes, Co-Conditions & Who It Affects

Typically congenital—present at birth due to a too-small posterior skull or improper fetal brain development

Sometimes acquired later due to injury, infection, or intracranial pressure changes

Likely multifactorial: genetic predisposition, connective-tissue issues (like Ehlers‑Danlos), and developmental factors

Chiari often presents alongside other serious co-conditions, including:

• Scoliosis (spinal curvature)
• Spinal stenosis (narrowing of spinal canal)
• Craniocervical instability / intracranial instability
• POTS (Postural Orthostatic Tachycardia Syndrome)
• Tethered cord, intracranial hypertension, and more

These overlapping conditions can complicate diagnosis and intensify symptoms, often requiring a multidisciplinary approach to care.

Treatment Options

• Monitoring: For mild or symptom-free cases, regular MRIs and checkups may be all that is needed
• Symptomatic care: Includes pain management, physical therapy, and addressing breathing or cardiac symptoms
• Surgery (decompression): Involves removing bone from the skull base or upper spine (and sometimes adding a dural patch) to relieve pressure and restore CSF flow. Many patients report significant symptom improvement

Why It’s Often Misunderstood

• The degree of herniation doesn’t always match symptom severity—some people have pronounced symptoms with little anatomical descent
• Symptoms are diverse and often overlap with migraines, MS, fibromyalgia, or anxiety—leading to delays in diagnosis or mislabeling
• Patients frequently report being dismissed or told their MRI findings “aren’t severe enough” to explain their debilitating symptoms

Helpful Resources

• Institut Chiari de Barcelona – A specialized global center for Chiari, syringomyelia & scoliosis care
• Conquer Chiari Foundation – Comprehensive patient support, FAQs, and symptom guides

Want to dig deeper?

• Watch “What is Chiari?” on Chiari Academy’s YouTube channel for a clear overview
• Browse Conquer Chiari’s symptom library or ICSEB’s research for specifics on diagnostics and treatment approaches

 

 

Imagine waking up and your body already feels off — like gravity is hitting you harder than it should.
Your head is heavy, your neck feels like it’s holding up a stone, and there’s a deep pressure at the base of your skull, almost like something inside is pushing where it shouldn’t. 

Your limbs tingle without reason.
Sometimes your fingers go numb.
Your legs feel like they’ve forgotten how to be strong.
Muscles spasm. Your body twitches.
Your breathing shifts without warning — shallow one moment, irregular the next.
And sometimes, the heart feels like it’s misfiring — pounding too hard, skipping a beat, as if it’s not syncing with the rest of you.

Your vision might blur or split.
Lights feel too bright, movement too fast — like a migraine that forgot to bring the headache.
Other times, your brain hums or zaps, like static electricity behind your eyes.
You feel off-balance.
Out of sync.
Like one half of your body didn’t get the same instructions as the other.

And then there’s the part most people never see:
The countless doctor’s appointments.
The scans. The referrals. The long waits.
Being told “it doesn’t look that bad.”
Or “this shouldn’t be causing all that.”
Or worse — being dismissed entirely.

You start to question your own body.
You learn to advocate.
You try everything, hoping something will ease it.

Your thoughts slow.
Words stall.
The world moves, and your brain can’t always keep up.
Sometimes it’s a flicker.
Sometimes it’s a storm.
And most people wouldn’t even notice.

But inside, you feel miswired — like the signals between your brain and body have been rerouted or severed.

That’s Chiari.

Not just pain. Not just pressure.
But a constant, quiet disruption between what you want to do — and what your body will let you.