Chiari Malformation - Type 1
Fact: Research has shown there is no real correlation between the amount of descent (or herniation) and clinical symptoms (ConquerChiari.org)
What is Chiari Malformation?
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.
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
National Institute of Neurological Disorders And Stroke
National Organization for Rare Diseases
World Arnold Chiari Malformation Association
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:
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.