Chiari malformation

Información en español Title

Not a rare disease

Other Names:

Arnold-Chiari malformations; Arnold Chiari malformation

Categories:

Nervous System Diseases

Summary Summary

Chiari malformations are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination.^[1] The exact cause is still unknown. In some cases of Chiari Malformation type 1, genetic factors may be involved.^[2] Treatment may require surgery.^[1]

There are four types of Chiari malformations classified according to the degree of severity, with type 1 being the most common and least severe:

Chiari malformation type 1
Chiari malformation type 2
Chiari malformation type 3
Chiari malformation type 4

Some researchers add a type 0 to the classification, which is characterized by no or very little herniation of the cerebellum.^[1]

Last updated: 9/14/2016

Research Research

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

ClinicalTrials.gov lists trials that are studying or have studied Chiari malformation. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

Organizations Organizations

Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD. Suggest an organization to add.

Organizations Supporting this Disease

American Syringomyelia Alliance Project, Inc.
PO Box 1586
Longview, TX 75606-1586
Telephone: 800-272-7282
Fax: 903-757-7456
E-mail: info@ASAP.org
Website: http://www.asap.org
Chiari & Syringomyelia Foundation, Inc.
c/o Dorothy Poppe
29 Crest Loop
Staten Island, NY 10312
Telephone: 718-966-2593
E-mail: dpoppe@CSFinfo.org
Website: http://www.csfinfo.org/
Conquer Chiari
320 Osprey Court
Wexford, PA 15090
Telephone: 724-940-0116
E-mail: director@conquerchiari.org
Website: http://www.conquerchiari.org/index.html
World Arnold Chiari Malformation (ACM) Association
31 Newtown Woods Road
Newtown Square
Philadelphia, PA 19073
Telephone: 610-353-4737
Website: http://www.pressenter.com/~wacma/
Worldwide Syringomyelia & Chiari Task Force Inc.
PO Box 491975
Lawrenceville, GA 30049
Telephone: 914-510-CURE (2873)
E-mail: wstfcure@wstfcure.org
Website: http://www.wstfcure.org

Living With Living With

Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.

Healthcare Resources

Family Village is a global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those who provide services and support. Click on Family Villiage to view the resource page on Arnold-Chiari malformation.

Learn More Learn More

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

The Chiari & Syringomyelia Foundation, Inc. offers information on Chiari malformation
Conquer Chiari, an organization that supports chiari malformation, offers information and resources for Chiari malformation
The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.

In-Depth Information

Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
PubMed is a searchable database of medical literature and lists journal articles that discuss Chiari malformation. Click on the link to view a sample search on this topic.

Related Diseases Related Diseases

The following diseases are related to Chiari malformation. If you have a question about any of these diseases, you can contact GARD.

GARD Answers GARD Answers

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My sister has Arnold Chiari malformation (Chiari malformation) and I feel like that might be what's going on with me! Is ACM so rare two sisters couldn't possible have the same conditions? See answer