Living with Intradural spinal arachnoid cyst
A fluid-filled sac near the spinal cord that can press on nerves, causing back pain, numbness, or leg weakness.
Understanding Intradural spinal arachnoid cyst
Symptoms depend on the size and location of the cyst. Some people have no symptoms. Symptoms usually occur when the cyst presses on the spinal cord or nearby nerves. Cysts are often present at birth and are caused by developmental differences in the spinal cord during pregnancy.
Signs & symptoms
Symptoms vary, and some people have none. GARD lists these:
- Back and leg pain that gets worse over time
- Tingling or numbness in the hands or feet
- Weakness of the legs
- Muscle spasms and stiff, slow leg movements (spasticity)
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.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 rare disease patient organizations for support
- 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
Cysts are often present at birth and are caused by developmental differences in the spinal cord during pregnancy. GARD lists autosomal dominant inheritance.
Also known as: spinal intradural arachnoid cysts
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Intradural spinal arachnoid cyst.
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