Living with Posterior meningocele
A birth difference of the spine in which a sac of spinal fluid pushes out through a gap in the back bones, usually without harming nerves.
Understanding Posterior meningocele
The sac is covered by skin, which may be thin, abnormal or sore. The spinal cord and nerves are generally not in the sac and work normally. A tethered cord sometimes occurs. It most commonly occurs in the lower back or tailbone area. It is present from birth or infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- A sac of spinal fluid at the back of the spine
- Neural tube defect (spina bifida)
- Brisk reflexes
- Trouble walking (less common)
- Bladder control problems (less common)
- Chiari malformation (less common)
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.
- 4Connect with expert centers
Spina Bifida Association 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: Spina Bifida 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 Spina Bifida Association
- 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 changes in genes cause this condition but doesn't name a gene or describe an inheritance pattern.
Patient organizations
- Spina Bifida AssociationPosterior meningocele · United States
You are more than your diagnosis
Perspectives from people navigating life with Posterior meningocele.
Explore research for Posterior meningocele
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