Living with Dermoid or epidermoid cyst of the central nervous system
A rare noncancerous cyst present from birth in the brain or spine, with symptoms that depend on where it is.
Understanding Dermoid or epidermoid cyst of the central nervous system
It forms when skin-type tissue ends up in the wrong place during early development. Dermoid cysts also contain deeper skin layers and skin parts. It is most common in the lower back region. Symptoms depend on where it is and how big it is. The cysts may rupture and cause chemical meningitis.
Signs & symptoms
Symptoms depend on location. For cysts in the spine, GARD's summary lists:
- Pain
- Muscle weakness
- Movement and sensation problems
- Loss of bladder control (incontinence)
- Pressure inside the skull (for brain cysts)
- Vision problems and walking changes (for brain cysts)
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.
- 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); Genetic specialists (geneticists)
- 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
It comes from a displacement of skin-type tissue during early development, which then grows in the central nervous system.
Also known as: dermoid or epidermoid cyst of the cns
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 Dermoid or epidermoid cyst of the central nervous system.
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