Living with Chiari type II malformation
A condition in which parts of the brain extend into the opening at the base of the skull, usually along with spina bifida.
Understanding Chiari type II malformation
It is usually accompanied by a myelomeningocele, a form of spina bifida in which the spinal canal and backbone do not close before birth. That can cause partial or complete paralysis below the spinal opening. Severity varies greatly and it can cause serious complications in infancy or childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Poor balance and coordination (ataxia)
- Bluish skin color (cyanosis)
- Trouble swallowing or speaking (bulbar signs)
- Spinal cord changes in the neck (cervical myelopathy)
- Missing connection between brain halves (agenesis of corpus callosum)
- Spina bifida (myelomeningocele)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Bobby Jones Chiari & Syringomyelia Foundation and Spina Bifida Association may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Bobby Jones Chiari & Syringomyelia Foundation, Spina Bifida Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Bobby Jones Chiari & Syringomyelia Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet.
Also known as: arnold chiari malformation type ii; arnold chiari type 2; arnold-chiari malformation type 2; arnold-chiari malformation type ii; arnold-chiari type ii malformation; chiari malformation type 2
Patient organizations
- Bobby Jones Chiari & Syringomyelia FoundationChiari type II malformation · United States
- Spina Bifida AssociationChiari type II malformation · United States
- American Syringomyelia & Chiari Alliance ProjectChiari type II malformation · United States
- Conquer ChiariChiari type II malformation · United States
You are more than your diagnosis
Perspectives from people navigating life with Chiari type II malformation.
Explore research for Chiari type II malformation
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