Chiari Malformation - Type 1

Fact: Research has shown there is no real correlation between the amount of descent (or herniation) and clinical symptoms (

What is Chiari Malformation?
(pronounced Kee-are-ee)

CM Type I is a congenital or acquired brain disease, many times not showing signs until ages 20-40.  Simply, cerebral spinal fluid flow is blocked, causing downward pressure, pushing the lower portion of the brain  onto the brain stem causing various symptoms throughout the body.  Although not considered a fatal condition, if the disease progresses, it can cause permanent nerve damage if not treated either medically or surgically by a professional familiar with CMI.

Chiari Malformation is considered a rare disease and is listed as such on The National Organization for Rare Diseases (NORD) website. It is believed that 1 in 1000 people suffer from Chiari Malformation (newer estimates suggest 1 in 250) and are misdiagnosed for years if not a life time, resulting in chronic, unrelenting pain and issues.

Common Misdiagnosis:
  • Meniere’s Disease
  • Multiple Sclerosis
  • Fibromyalgia 
  • Lyme
  • Chronic Fatigue Syndrome
  • Chronic Headaches
  • Strabismus
  • Chronic Depression
  • Sinus Disease
Early Detection is KEY

The earlier that CMI is detected the better the prognosis.  Early detection may prevent prolonged health issues, permanent nerve damage, & even paralysis.  CMI may be manageable & treatment may relieve years of pain, stress, anxiety, & depression from being misunderstood & misdiagnosed.  Treatment is determined by a medical professional through multiple tests & an in-depth review of medical history.  Surgery may be necessary & is determined by the specialist. How familiar is your doctor with Chiari??
Symptoms vary widely between individuals and can include a few or several of the following:

  • Headache(esp. if daily and at lower back of head)
  • Painful tension in neck
  • Fatigue
  • Migraines
  • Dizziness
  • Visional disturbances/loss of vision/spots in vision/double vision/seeing spots or "halos"/ nystagmus
  • Tingling/numbness in extremeties
  • General imbalance/clumsiness
  • Memory loss
  • Restricted Movement
  • Intolerance to bright light/difficulty adjusting to light change
  • Vertigo from position change or sudden standing
  • Difficulty walking on uneven ground/feeling ground under feet
  • Poor/degraded motor skills
  • Difficulty Driving
  • Difficulty negotiating steps
  • Pressure/pain in the neck
  • Pressure/pain behind the eyes (soreness in the eyeballs)
  • Back Pain
  • Neck spasms
  • Insomnia
  • Ringing in ears (like the tone heard in a hearing test)
  • Swaying
  • Pain when changing position
  • Tingling/crawling feeling on scalp
  • Intolerance to loud/confusing sounds
  • Decreased sensation to touch in extremeties
  • Decreased sensitivity to temperature
  • Pain & tension along ear/eye/jawline
  • Difficulty swallowing/lump in throat/sore throat/swollen lymph nodes
  • Drooling
  • Spontaneous vertigo
  • Hand tremors
  • Poor circulation/ cold hands  - cold feet
  • Sinus/ Mucous problems
  • Sleep apnea
  • Decreased muscle tone
  • Pressure in ears/ ears feel stopped up
  • Nausea
  • Difficulty reading/ focusing on text
  • Depth perception problems
  • Burning sensation in extremeties/shoulder blades
  • Menstrual problems/ severe cramping during period
  • Fluid-like sound in ears (like water running)
  • Loss of sexual interest/ lack of sensation in pelvic area
  • Pulling sensation while sitting/ standing
  • Intense itchiness w/ profuse sweating
  • Slurred speech
  • Gag reflex problems/ lack of gag reflex
  • Pressure/tightness in chest
  • Loss of bladder control
  • Frequent urination
  • Dehydration/excessive thirst
  • Electric-like burning sensations
  • Unequal pupil size
  • Loss of taste
  • Popping/cracking sounds in neck or upper back when stretching
  • Dizziness
  • Loss of smell/ problems with sense of smell
  • Dry skin and lips
  • Sudden/abrupt changes in blood pressure due to awkward position of head
  • Hiccups associated with drinking carbonated beverages
  • Skin problems

Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints.
Want to learn more?

The following are organizations and/or websites dedicated to providing information and education surrounding Chiari Malformation. These organizations are dedicated to research, education, awareness, and/or support. They are listed in Alphabetical order without any preference or prejudice. Listing these organizations is not a recommendation or referral in any regard for seeking treatment or consultation or support for treatment.

American Association of Neurological Surgeons
American Syringomyelia & Chiari Alliance Project
Chiari Connection International
Chiari & Syringomyelia Foundation
Conquer Chiari
National Institute of Neurological Disorders And Stroke
National Organization for Rare Diseases
World Arnold Chiari Malformation Association