Living with Arachnoid cyst
Fluid-filled sacs near the brain or spinal cord that may cause headaches or other symptoms, or none at all.
Understanding Arachnoid cyst
Primary cysts are present at birth. Secondary cysts are less common and can follow head injuries, meningitis, tumors, or brain surgery. Symptoms depend on the cyst's size and location. Many people develop symptoms in the first year of life, but some never have any. They can also be part of a genetic syndrome.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Headache
- Cyst seen on brain imaging
- Nausea and vomiting
- Seizures
- Hearing and vision changes
- Trouble with balance and walking
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, genetic specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Pituitary Network Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Pituitary Network 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 Child Neurology 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 says primary cysts result from unusual development of the brain and spinal cord early in pregnancy. Secondary cysts follow injury, infection, tumors, or surgery. GARD lists a recessive inheritance pattern for some cases.
Also known as: arachnoid cysts; fluid-filled sac located in membrane surrounding brain or spinal cord
Patient organizations
- Child Neurology FoundationArachnoid cyst · United States
- Pituitary Network AssociationPituitary deficiencies · United States
You are more than your diagnosis
Perspectives from people navigating life with Arachnoid cyst.
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