Living with Chiari type I malformation
A condition in which the lower part of the brain sits too far down toward the spine, sometimes causing headaches and balance problems.
Understanding Chiari type I malformation
It can cause headaches, neck pain, dizziness, and ringing in the ears. It can also cause vision problems, trouble swallowing, and problems with balance and coordination. Some people have no symptoms at all.
Signs & symptoms
Symptoms vary from person to person. GARD's summary lists these:
- Headaches
- Neck pain
- Dizziness
- Ringing in the ears
- Vision problems
- Trouble swallowing, balance, and coordination
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
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Consider genetic testing
Changes in DKK1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Bobby Jones Chiari & Syringomyelia Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Bobby Jones Chiari & Syringomyelia Foundation
- 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
Changes in the DKK1 gene are listed for this condition. GARD lists it as inherited in an autosomal dominant way, so one changed copy of the gene can cause it.
Also known as: arnold chiari type 1; arnold chiari type i malformation; arnold-chiari malformation type 1; arnold-chiari malformation type i; arnold-chiari type i malformation; chiari 1 malformation
Patient organizations
- Bobby Jones Chiari & Syringomyelia FoundationChiari type I malformation · United States
- American Syringomyelia & Chiari Alliance ProjectChiari type I malformation · United States
- Conquer ChiariChiari type I malformation · United States
You are more than your diagnosis
Perspectives from people navigating life with Chiari type I malformation.
Explore research for Chiari type I malformation
Explore actively recruiting Chiari type I malformation studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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