Spinal dysraphism with a posterior meningocele

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:268744
Who is this for?
Show terms as
8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

Overview

Spinal dysraphism with a posterior meningocele is a congenital neural tube defect in which there is incomplete closure of the vertebral column (spinal dysraphism) accompanied by a herniation of the meninges (the protective membranes surrounding the spinal cord) through a bony defect in the posterior aspect of the spine, forming a fluid-filled sac called a meningocele. Unlike myelomeningocele, the spinal cord and nerve roots are typically not contained within the herniated sac, which generally confers a more favorable neurological prognosis. However, the condition can still be associated with varying degrees of neurological impairment depending on the location and extent of the defect. The condition primarily affects the musculoskeletal and nervous systems. Clinical features may include a visible or palpable mass along the spine (most commonly in the lumbosacral region), skin abnormalities overlying the defect, and potential neurological symptoms such as lower limb weakness, sensory changes, or bladder and bowel dysfunction. Some patients may have associated tethered spinal cord or other spinal anomalies. The severity of symptoms varies widely, with some individuals remaining largely asymptomatic while others experience progressive neurological deterioration. Treatment is primarily surgical, involving repair of the meningocele to prevent infection (such as meningitis), cerebrospinal fluid leakage, and further neurological damage. Surgical closure is typically performed in the neonatal period or early infancy. Long-term management may include monitoring for hydrocephalus, tethered cord syndrome, and orthopedic or urological complications. A multidisciplinary approach involving neurosurgery, urology, orthopedics, and rehabilitation is often necessary. Folic acid supplementation before and during early pregnancy has been shown to reduce the risk of neural tube defects in general.

Also known as:

Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Spinal dysraphism with a posterior meningocele.

View clinical trials →

No actively recruiting trials found for Spinal dysraphism with a posterior meningocele at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Spinal dysraphism with a posterior meningocele community →

No specialists are currently listed for Spinal dysraphism with a posterior meningocele.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Spinal dysraphism with a posterior meningocele.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Spinal dysraphism with a posterior meningoceleForum →

No community posts yet. Be the first to share your experience with Spinal dysraphism with a posterior meningocele.

Start the conversation →

Latest news about Spinal dysraphism with a posterior meningocele

No recent news articles for Spinal dysraphism with a posterior meningocele.

Follow this condition to be notified when news becomes available.

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Spinal dysraphism with a posterior meningocele

What is Spinal dysraphism with a posterior meningocele?

Spinal dysraphism with a posterior meningocele is a congenital neural tube defect in which there is incomplete closure of the vertebral column (spinal dysraphism) accompanied by a herniation of the meninges (the protective membranes surrounding the spinal cord) through a bony defect in the posterior aspect of the spine, forming a fluid-filled sac called a meningocele. Unlike myelomeningocele, the spinal cord and nerve roots are typically not contained within the herniated sac, which generally confers a more favorable neurological prognosis. However, the condition can still be associated with v

How is Spinal dysraphism with a posterior meningocele inherited?

Spinal dysraphism with a posterior meningocele follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Spinal dysraphism with a posterior meningocele typically begin?

Typical onset of Spinal dysraphism with a posterior meningocele is neonatal. Age of onset can vary across affected individuals.