Living with Internal carotid agenesis
A condition in which one or both main arteries to the brain do not form, often with no symptoms.
Understanding Internal carotid agenesis
The missing artery can be on either side. Many people have no symptoms because the body builds other blood vessel paths to the head. Some people have headaches, blurred vision, nerve palsy, seizures, or weakness on one side. There is a higher chance of enlarged blood vessels (aneurysms) in the brain.
Signs & symptoms
Symptoms vary, and many people have none. GARD lists these:
- Headaches
- Blurred vision
- Seizures (epilepsy)
- Weakness on one side of the body (hemiparesis)
- Weakness of nerves in the head (palsy)
- Widened brain arteries (aneurysm)
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Brain Aneurysm Foundation
- 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's summary doesn't describe a cause for this condition. It occurs when the artery does not develop.
Also known as: agenesis of internal carotid artery; internal carotid absence; internal carotid artery agenesis
Patient organizations
- Brain Aneurysm FoundationInternal carotid agenesis · United States
You are more than your diagnosis
Perspectives from people navigating life with Internal carotid agenesis.
Explore research for Internal carotid agenesis
Explore actively recruiting Internal carotid agenesis studies with HealthSpark.
Find actively recruiting studies for Internal carotid agenesis with HealthSpark. Share your city to explore research near you.
- 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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