Living with Vein of Galen aneurysmal malformation
A rare blood vessel problem in the brain, often seen before or soon after birth, that can strain the heart.
Understanding Vein of Galen aneurysmal malformation
Too much blood rushes to the heart, which can lead to heart failure. It is often seen on an ultrasound late in pregnancy or after birth. Other features can include a larger head from extra fluid in the brain, prominent veins on the face and scalp, developmental delay, and headache.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Abnormal blood vessels in the brain
- Abnormal connections between arteries and veins
- Widened blood vessels
- Larger head size from fluid in the brain
- Prominent veins on face and scalp
- Developmental delay
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 EPHB4 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
VOGM Support Network 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: VOGM Support Network
- 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 VOGM Support Network 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 says the exact cause is unknown, but it appears to come from a problem in early development before birth. It lists the EPHB4 gene.
Also known as: aneurysm of the vein of galen; ectasia or varix of the vein of galen; galen vein aneurysm; galenic arteriovenous malformation; median prosencephalic arteriovenous fistula; vein of galen aneurysm
Patient organizations
- VOGM Support NetworkVein of Galen aneurysmal malformation · United States
- The Aneurysm and AVM FoundationVein of Galen aneurysmal malformation · United States
You are more than your diagnosis
Perspectives from people navigating life with Vein of Galen aneurysmal malformation.
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