Living with Myelomeningocele
The most serious form of spina bifida, in which part of the spinal cord and nerves push out through an opening in the spine.
Understanding Myelomeningocele
Parts of the spinal cord and nerves pop out through an open part of the spine, which damages the spinal cord and nerves. This can reduce feeling and leg movement below the opening and affect bladder and bowel control. Many children develop extra fluid around the brain (hydrocephalus). It can be noticed during pregnancy or at birth.
Signs & symptoms
GARD doesn't list a detailed symptom list, but the summary describes these features:
- Less ability to feel sensation below the opening
- Less leg movement
- Trouble controlling the bladder
- Trouble controlling the bowels
- Extra fluid around the brain (hydrocephalus)
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
The cause is unknown. Both genetic and environmental factors are thought to be involved. Low folic acid early in pregnancy is known to contribute to spina bifida.
Also known as: hydromeningomyelocele; hydromyelomeningocele
Patient organizations
- Spina Bifida AssociationMyelomeningocele · United States
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Perspectives from people navigating life with Myelomeningocele.
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