Chiari Malformation... a rare and debilitating disorder. long, but please check it out.

Dove - posted on 12/05/2012 ( 1 mom has responded )




Hi. I respond to many, many posts on here all the time, but almost never start my own.

I want to share w/ you about something that has become extremely important to me over this past year. It is a rare condition that can go undiagnosed or misdiagnosed your entire life. I stink at explaining it in my own words, so I'm going to do some c&p'ing from a few different sites in addition to my own words.

From :

Chiari malformation is a congenital (i.e. present at birth) structural problem at the base of the skull that affects the brain and spinal cord. In fact it is not a malformation of the brain at all. More accurately, the lower portion of the skull, the portion known as the posterior fossa, is too small to accomodate the lower portion of the brain. As a result, a portion of the cerebellum called the tonsils is forced to protrude into the spinal column. This results in compression of the brain stem and spinal cord and interferes with the flow of spinal fluid. It is the compression of the brain stem and spinal cord that is primarily responsible for the symptoms. We have learned that compression that is sufficient to cause symptoms can occur even when the cerebellar tonsils protrude by as little as 1 millimeter.

Types of Chiari Malformation (CM)

Type I involves the extension of the cerebellar tonsils (the lower part of the cerebellum) into the foramen magnum.There are usually no other associated malformations of the brain. This is the only form of Chiari malformation to present in adult life.

Type II involves the extension of both cerebellum and brainstem tissue into the foramen magnum. Type II is always accompanied by a myelomeningocele — a severe form of spina bifida- and therefore is recognized at birth. We do not treat Chiari II malformation.

Type III is the most serious form of CM. It is quite rare and involves the protrusion or herniation of the hind part of the brain through a defect in the skull. This diagnosis is also evident at birth. We do not treat Chiari III malformation.

Some people describe a Chiari 0 malformation. This is simply a Chiari I malformation in which the cerebellar tonsils do not protrude by the standard 5 mm. These are the patients that are frequently misdiagnosed because of the failure of the current diagnostic criteria to accurately reflect the underlying neurological problem. Many of our patients would fall into this category.

* I was diagnosed w/ type 1 at 15 years old due to an MRI from experiencing 'migraines', but so little information was available (20 years ago) that I actually didn't even find out about the diagnosis until earlier this year.

Symptoms include

Headache – This is the most common symptom of Chiari malformation. The headache is often pressure like and usually begins in the back of the head often radiates behind the eyes. Coughing, laughing, bending forward, sneezing or looking up can worsen the headache. Headache may be confused with migraine.

Neck Pain – often pressure like and radiating down the spine and across the shoulders.

Dizziness/vertigo – often worsened by extension of the neck

Vague pains throughout the body

Impaired balance


Chronic nausea

Foggy thinking, poor memory and concentration

Frequent or urgent urination

Irritable bowel syndrome

Auditory Symptoms – ringing in the ears, decrease in the ability to hear or sensitivity to sounds

Difficulty swallowing

Changes in the voice – This can include hoarseness or the inability to regulate the voice when shouting or singing.

Visual Symptoms – including double vision, sensitivity to light, blind spots.

If you would like more information about this and a way that you can help or spread awareness, I would be happy to share a few of the links w/ you (via pm) that I have 'collected' over the past year.


Dove - posted on 12/05/2012




Just want to 'push' this post out in the open for the late night crowd (or morning... depending on time zones).

I'll probably bump it up a couple of times, but then I promise I'll let it die. ;)

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