Chiari Malformation and CCI

Chiari Malformation is a neurological disorder where part of the brain (the cerebellar tonsils) herniates or descends out of the skull into the spinal canal. This results in compression of the spinal cord and brain stem. As a result, this compression disrupts the normal flow of cerebrospinal fluid (CSF) leading to disabling neurological symptoms (headaches, occipital neuralgia, numbness and tingling in hands and feet, weakness, nausea/vomiting, dizziness, low blood pressure, and many more).


Symptoms include but are not limited to:

  • Headaches (often described as "intense pressure" that originates in the back of the head and travels upward- made worse by exertion)
  • Fatigue
  • Muscle weakness
  • Numbness and tingling of hands and feet
  • Neck and scapula pain
  • Difficulty swallowing
  • Dizziness
  • Nausea/Vomiting
  • Tinnitus
  • Impaired coordination
  • Tachycardia
  • Chest pain
  • Hypotension
  • Syncope

*There are over 100 symptoms related to Chiari Malformation.


*International Chiari Association--please visit this site. International Chiari Association is a wonderful Chiari nonprofit organization dedicated to helping other Chiarians.
Fact Sheet for Chiari
The Chiari Institute
Conquer Chiari
Chiari and Connective Tissue Disorders

 Craniocervical instability (CCI) is a structural instability of the craniocervical junction (where the skull and neck meet), which can lead to deformation of the brain stem, upper spinal cord, and cerebellum (lower part of the brain). It is primarily seen in patients with EDS and other hereditary disorders of connective tissue. In severe cases a cranoicervical or cervical fusion may be necessary. 

Symptoms of Craniocervical Instability include (but are not limited to):
  • Headaches
    • Often pressure-like--typically the result of impaired CSF flow 
  • Occipital neuralgia 
    • Sharp, knife-stabbing, shooting pain often one sided (can be bilateral) that travels from the base up the skull up to behind the eye 
  • Neck pain 
  • Difficulty holding one's head up (bobble-head)
  • Vision changes 
  • Dysautonomia
  • Facial pain/numbness
  • Sleep apnea
  • Nausea/vomiting 
  • Nystagmus 
  • Difficulty swallowing
  • Balance problems 
  • Hearing loss/tinnitus/auditory changes
  • Impaired coordination 
  • Brain fog and cognitive challenges
Not every individual with craniocervical instability (CCI) experiences all of the above symptoms (and some may experience symptoms not listed). Symptoms may be constant or intermittent depending on the position of the cervical spine.

 Pictures from surgery in 2014:
Pre-op- "I'm ready"

Post-op in the Surgical ICU
2 days post-op
1 week post-op
2 weeks post-op--reaction to dissolving sutures
4 weeks post-op