DONATE

Cerebellar Ptosis

The Neurosurgeon Interview

Published: 20 August 2026
Written by Administration Team
No comments
Categories: Acquired Chiari Malformation, Atlantoaxial Instability, Cerebellar Ptosis, Comorbidities, Craniocervical Instability, Degenerative Disc Disease, Dysautonomia, Ehlers-Danlos Syndromes, Empty Sella Syndrome, Etiological Co-Factors, Heritable Disorders of Connective Tissue, Hydrocephalus, Idiopathic Intracranial Hypertension, Intracranial Hypertension, Intracranial Hypotension, Mast Cell Activation Syndrome, Syringomyelia, Tethered Cord Syndrome

Make the Most of Your Initial Appointment

Most patients go to a neurosurgeon expecting an expert in their condition. However, while a doctor may be a brilliant surgeon, their knowledge of complex Ehlers-Danlos Syndromes (EDS) comorbidities can rank dangerously low.

Traditional Chiari decompression has an estimated failure rate approaching 50%. When a surgeon claims a “100% success rate,” be highly cautious. They are usually measuring mechanical completion (the bone was removed, the patch was sewn in) rather than how the patient actually feels.

Furthermore, data from our community of over 10,000 members reveals a deeply deceptive tactic used to protect these perfect statistics: these surgeons systematically cherry-pick their cases, dismissing complex patients before surgery—and entirely abandoning them if they develop a post-decompression problem afterward.

When a hypermobile patient experiences a post-op slump, worsening fluid pressure, or progressive instability, these surgeons routinely gaslight them, claim the operation was a structural success, and tell them to find a new neurosurgeon when post-decompression problems appear. By erasing injured patients from their clinics, they erase them from their failure data.

We deserve better than a tidy post-op scan followed by medical abandonment. Use the interview script below to find out if your surgeon understands a crowded skull versus a prolapsing brain.

Part 1: The Foundation (Crowded Skull vs. Prolapsing Brain)

  • Defining the Anatomy:
    How do you differentiate between a true congenital Chiari malformation and an Acquired Chiari Malformation driven by connective tissue laxity? Since the standard diagnostic criteria for Chiari is based entirely on the size of the tissue prolapse (herniated tonsils) rather than the physical size of the skull cavity, an MRI report for a congenital crowded skull and an Acquired prolapsing brain will look completely identical. How are you ruling out the latter before operating?
  • Volumetric Data:
    Are you basing my diagnosis solely on the millimeter drop of my cerebellar tonsils? Did my radiologist measure the physical volume of my posterior fossa to prove my skull cavity is actually too small?
  • The Prolapsing Risk:
    If my posterior fossa volume is normal, but my ligaments are fragile, how will performing a decompression prevent my hindbrain from simply prolapsing further into the newly enlarged opening?
  • The Chiari 1.5 Distinction:
    Looking at my sagittal scans, is any part of my medulla oblongata (brainstem) herniated or elongated below the foramen magnum? If yes, how does a basic decompression address this altered brainstem position?

Part 2: Track 1 — The Cervical Spine Instability Pathway

  • The Core Measurements:
    What are my exact measurements for the Clivo-Axial Angle (CXA), Grabb-Oakes, and Harris measurements? [1]
  • Dynamic Imaging:
    Since instability is a motion failure, will you order Upright Dynamic (Flexion/Extension) MRI or Digital Motion X-Ray (DMX) to calculate how many millimeters my skull translates when moving? [2]
  • The Subaxial Foundation (C3–C7):
    Have you evaluated my mid-to-lower neck for Subaxial Instability (SAI) and premature Degenerative Disc Disease (DDD)? If my lower neck column is unstable or collapsing, how will my upper neck withstand the stress of a skull-base decompression? [4]
  • The Full-Spinal & Brain Scan Blindspot:
    If you are ordering a cervical scan but refusing a brain scan (or vice versa), how can we accurately map my neuro-anatomy? Since the central nervous system is one continuous column, how can we safely plan an irreversible surgery without a complete visualization of my brain down to my lumbar spine?
  • The Syrinx Origin:
    If I have a Syringomyelia (syrinx), how are we ruling out localized spinal cord compression from C3–C7 instability as the true driver of the cavity, rather than a skull-base blockage alone? If you refuse to scan my thoracic and lumbar spine, how can we be sure there isn’t a secondary syrinx or a tethering point fueling this fluid buildup? [4]

Part 3: Track 2 — The Traction “Pull” Track

  • Addressing the Occult:
    Are you experienced in diagnosing Occult Tethered Cord Syndrome (OTCS)? If my conus medullaris terminates at a “normal” level on a standard supine MRI, how are we ruling out a tight, stretched cord that is anchoring my nervous system? [3]
  • Advanced High-Resolution Imaging:
    Will you order a CISS (Constructive Interference in Steady State) MRI sequence of my lumbar spine? Since standard thick-slice MRIs miss micro-structural tension, will we use a CISS sequence to check for a thickened filum terminale or nerve roots pinned against the spinal canal walls? [3]
  • Prone Imaging Dynamics:
    Will you order a Prone Lumbar MRI (lying on your stomach) alongside the CISS sequence to see if my spinal cord is pathologically anchored and fails to float forward normally? [4]
  • Medullary Stretching & Dysautonomia:
    Are my profound autonomic symptoms (POTS, blood pressure crashes) coming from direct brainstem compression, or is a tethered cord stretching my medulla oblongata from the bottom up? [3, 4]
  • Surgical Order of Operations:
    If I have an occult tethered cord pulling my brain down, why should we decompress my skull before releasing the bottom tension? Won’t the rubber-band pull simply drag my brainstem deeper into the empty surgical site?

Part 4: Track 3 — The Low-Pressure “Siphon” Track

  • The S.E.E.P.S. Scan Review:
    Do you see any of the classic signs of spontaneous intracranial hypotension (SIH) on my brain MRI? [5]
    • S — Subdural fluid collections?
    • E — Enhancement of the pachymeninges (brain lining)?
    • E — Engorgement of dural venous structures?
    • P — Pituitary hyperemia (enlargement)?
    • S — Sagging of the brain/brainstem?
  • The Invisible Fistula:
    Are you aware that CSF-Venous Fistulas (CVFs) act like an open drain, siphoning my brain downward, yet leave zero fluid pools on standard spinal MRIs? [5]
  • Advanced Imaging Verification:
    If I have a clear orthostatic (positional) headache but a “normal” MRI, will you refer me to a specialized CSF leak center for a Digital Subtraction Myelogram (DSM) or Ultrafast CT Myelogram to find the hidden fistula or leak before operating on my head? [6]

Part 5: Track 4 — The High-Pressure Push Track

  • High-Pressure Structural Signs:
    Does my brain MRI show an Empty Sella (or partially empty sella), flattened lateral ventricles, or distension of the optic nerve sheaths? [7]
  • Venous Stenosis Assessment:
    Since dural sinus collapse is highly prevalent in the EDS population, will you order a Magnetic Resonance Venogram (MRV) to evaluate my internal brain drainage? [7]
  • The Outside-In “Eagle” Compression:
    Because I have a hypermobile neck, will you order a 3D-CT Reconstruction of my skull base to rule out Eagle Syndrome? Are my elongated or calcified styloid processes mechanically crushing my internal jugular veins when I turn my head? [7, 8]
  • The Post-Op Slump Risk:
    If my brain is being pushed down by high pressure from a blocked vein or Eagle Syndrome, how will a decompression fix my drainage? Won’t the high pressure simply shove my brain stem directly into the newly created space? [8]
  • Cranial Valve Check:
    If my high pressure has caused a Cranial CSF Leak (fluid leaking from nose or ears), why should we patch the leak before clearing the venous blockage that caused the pressure to blow out in the first place?

THE MASTER ADVOCACY RULE

If a neurosurgeon answers defensively, dismisses your measurements, or attempts to schedule an immediate decompression while ignoring met diagnostic criteria in Track 1, 2, 3, or 4: STOP.

An untreated comorbidity is the primary driver of a failed surgery. Walk away, protect your anatomy, and find a surgeon who treats the human being, not just the herniation.

You are informed, empowered, and absolutely Worth the Fight (WTF!)

Understanding Your Head and Neck Pain

Published: 11 March 2026
Written by Michelle Cole
No comments
Categories: Atlantoaxial Instability, Cerebellar Ptosis, Comorbidities, Craniocervical Instability, Degenerative Disc Disease, Dysautonomia, Ehlers-Danlos Syndromes, Etiological Co-Factors, Heritable Disorders of Connective Tissue, Intracranial Hypertension, Intracranial Hypotension

You Might Have More Than A Migraine If…

OCCIPITAL HEADACHES

Chiari headaches are felt at the occiput – at the base of the back of the skull and upper neck. They are generally tussive in nature, where they are exacerbated by valsalva maneuvers, which generally include: coughing, sneezing, heaving, laughing hard, or bearing down (like with a bowel movement or childbirth). These maneuvers reduce cardiac output (the amount of blood coming from the heart with each heartbeat), which in turn affects the attempted flow of cerebrospinal fluid, and it increases vagal stimuli. These headaches are often accompanied with feelings of vertigo, proprioception problems, gait problems, trouble swallowing, muscle spasms (commonly starts in the eyelids – blepharospasm), memory deficits, and cognitive difficulties (usually word recollection problems).

Occipital headaches occur at the back of the lower skull (occiput) and upper neck, on one or both sides of the upper spinal cord.

Since the pushing down of the cerebellar tonsils can be congenital or acquired, we need to pay attention to other clues that our headaches might be indicating…

PRESSURE HEADACHES

Pressure headaches are generally differentiated by position.

  • Low-pressure headaches: pressure is generally worse when upright and relieved by laying down.
  • High-pressure headaches: pressure is generally worse when laying down and relieved by being upright.
  • EXCEPTION TO THE RULE: Internal Jugular Venous Compression Syndrome (JVCS) increases intracranial pressure, but because the jugular vein is usually more open when laying down, it is usually relieved by laying down (which often causes confusion with low-pressure symptoms).

LOW-PRESSURE HEADACHES

Those that suffer from low-pressure headaches tend to report feeling like there is an invisible pressure pushing down from the top of the head, often making it feel like your “head is going to implode.” Low-pressure headaches are characterized by being worse when upright and relieved by laying down. Low-pressure headaches are typically a sign of a cerebrospinal fluid leak (CSF Leak). The longer that the leak has existed, the less obvious the positional element – meaning the patient can be upright longer before they feel the pressure at the top of their head and they tend to need to lay down longer before getting any measure of relief. Caffeine often helps relieve low-pressure headaches.

Click image to view a more complete list of common low-pressure symptoms.

Go to our article on CSF leaks.

High-Pressure Headaches (IH/IIH)

Those that suffer from high pressure tend to feel pressure behind the eyes (often mistaken for sinus headaches) and report feeling like their “head is going to explode” from the pressure. High-pressure headaches are generally characterized by being worse when laying down – often awaking in the middle of the night or first thing in the morning with a headache, and the headache tends to dissipate to some degree after being upright for a period of time (and that period of time is different for everybody). Caffeine generally exacerbates high-pressure headaches.

Click image to view a more complete list of common high-pressure symptoms.

Go to our article on IH/IIH

Connecting the Three Headaches

All of these are most common in patients with a connective tissue disorder such as Ehlers-Danlos Syndrome.

  • Untreated high pressure can push the cerebellar tonsils down into the foramen magnum where it blocks the flow of cerebrospinal fluid, leading to an Acquired Chiari Malformation (usually simply diagnosed and treated as a Chiari 1 Malformation) AND the blockage of cerebrospinal fluid further increases intracranial pressure.
  • Untreated high pressure can cause cranial leaks – often accompanied by cerebrospinal fluid leaking through the nose (CSF Rhinorrhea) or less commonly, the ears. (This can temporarily reduce intracranial pressure and its symptoms.)
  • Cranial leaks (often misdiagnosed with allergies) can sometimes seal on their own as the pressure reduces, leading to rebound high pressure (which is temporary) or continued high pressure if they originally had high pressure.
  • Untreated spinal leaks can create a suctioning or pulling down (sag) effect where the cerebellar tonsils get lodged into the foramen magnum, creating an Acquired Chiari Malformation (usually simply diagnosed and treated as a Chiari 1 Malformation). Once there, it blocks the flow of cerebrospinal fluid and increases the pressure (which can reduce spinal pressure and increase intracranial pressure), leading to the occipital headaches and other symptoms associated with any Chiari Malformation.

Major Problem Regarding Our Diagnoses & Treatment Options:

  1. Doctors and radiologists alike, tend to see the herniated tonsils and assume a small posterior fossa.
  2. Most do not check for high-pressure or low-pressure, even when directly asked and symptoms are present.
  3. When a posterior fossa decompression is finally offered, the high or low pressure is often left untreated which leads to a failed decompression.
  4. By the time sufferers get a name to go with their symptoms, we jump at the opportunity for relief.

The “Bobble-head Sensation” – When It Feels Like Your Neck Can No Longer Hold Up Your Head

While most of us experience this feeling either intermittently or continuously, it is generally related to structural instability issues:

  • Craniocervical Instability (CCI, also known as Syndrome of Occipitoatlantialaxial Hypermobility) involves vertical hypermobility (back and forth sliding) of the craniocervical junction (interface between the occipital bone and the 1st and 2nd vertebrae), where the neck is no longer properly supporting the cranium. This condition can be dangerous as it often involves brain stem compression that can lead to a vast array of symptoms of Dysautonomia (dysfunction of the Autonomic Nervous System – ANS).
  • Subaxial Instability (SAI; also known as Cervical Instability) involves hypermobility of the C2/C3 to the C7 intervertebral discs. This condition (like most conditions involving the cervical spine) is a major cause of muscle spasms (in the neck and throughout the body at any point below the disc issues. When these neck spasms occur, they can cause the “Bobble-head sensation” where it feels like your neck can no longer hold up your head. This disc degeneration can lead to paralysis as discs compress the spinal cord.

Important Questions to Ask Your Neurosurgeons: https://chiaribridges.org/important-questions-for-your-neurosurgery-appointment/.

Originally written 10/2019
Updated 12/2022
Updated 11/2024
Updated 3/2026

Oropharyngeal dysphagia

Published: 12 August 2024
Written by Administration Team
No comments
Categories: Acquired Chiari Malformation, Atlantoaxial Instability, Cerebellar Ptosis, Comorbidities, Craniocervical Instability, Dysautonomia, Intracranial Hypertension, Syringomyelia, Tethered Cord Syndrome

Oropharyngeal dysphagia = when your upper esophageal sphincter, pharynx, larynx, and/or tongue fail to coordinate properly when trying to swallow.

Can occur when one or more of the following nerves is damaged or compressed: facial nerve (CN VII), glossopharyngeal nerve (CN IX), vagus nerve (CN X), and hypoglossal nerve (CN XII).

Now that you know it’s a thing… ask your doctor for a swallow test to confirm it.

✕
Chiaribridges

FREE
VIEW