Isolated posterior meningocele

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:268810Q05.7Q05.8Q05.3
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

What is Isolated posterior meningocele?

Isolated posterior meningocele is a rare congenital neural tube defect in which the meninges (the protective membranes surrounding the spinal cord) protrude through a defect in the posterior vertebral arches, forming a cerebrospinal fluid-filled sac beneath the skin. Unlike myelomeningocele, this condition does not involve herniation of spinal cord tissue or neural elements into the sac, which generally results in a more favorable neurological prognosis. The defect can occur at various levels of the spine, including thoracic, lumbar, and sacral regions. Clinical presentation varies depending on the size and location of the meningocele. Many patients are identified at birth due to a visible or palpable soft mass along the midline of the back. In uncomplicated cases, neurological function may be preserved, though some patients may experience symptoms such as tethered spinal cord, urinary or bowel dysfunction, lower limb weakness, or sensory changes. Skin overlying the defect may be normal or show abnormalities such as dimpling, hair tufts, or discoloration. Hydrocephalus may occasionally be associated. The primary treatment for isolated posterior meningocele is surgical repair, which involves excision of the meningocele sac and closure of the dural and bony defects. Early surgical intervention is generally recommended to prevent complications such as infection (meningitis), rupture of the sac, or progressive neurological deterioration from tethering. Prenatal diagnosis is possible through ultrasound and maternal serum alpha-fetoprotein screening. Folic acid supplementation before and during early pregnancy is recognized as an important preventive measure for neural tube defects in general. Long-term outcomes are generally favorable when the defect is isolated and surgically corrected, though follow-up monitoring for tethered cord and urological function is recommended.

Clinical phenotype terms— hover any for plain English:

  • MeningoceleHP:0002435
  • Neural tube defectHP:0045005
  • EnuresisHP:0000805
  • Tethered cordHP:0002144
  • Chiari malformationHP:0002308
  • HypokinesiaHP:0002375
  • Occipital meningoceleHP:0002436
  • Limitation of neck motionHP:0005986
  • Upper limb spasticityHP:0006986
  • Thoracic hemivertebraeHP:0008467
  • ParaplegiaHP:0010550
  • LipomyelomeningoceleHP:0025480
  • Increased head circumferenceHP:0040194
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

Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly

No FDA-approved treatments are currently listed for Isolated posterior meningocele.

View clinical trials →

Source: ClinicalTrials.gov · synced daily · phases, status, and PI names normalized at ingest

No actively recruiting trials found for Isolated posterior meningocele at this time.

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

Search ClinicalTrials.gov ↗Join the Isolated posterior meningocele community →

Source: NPI Registry + PubMed · trial PI roles cross-referenced with ClinicalTrials.gov · ranked by match score (publications + PI activity + community signal)

No specialists are currently listed for Isolated posterior meningocele.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers

Source: NORD Rare Disease Centers + NIH Undiagnosed Diseases Network (UDN) · centers verified active within last 12 months

🏨 Children's

Children's Hospital Colorado Rare Disease Program

Children's Hospital Colorado

📍 Aurora, CO

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Boston Children's Hospital Rare Disease Program

Boston Children's Hospital

📍 Boston, MA

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

🏨 Children's

Ann & Robert H. Lurie Children's Hospital Genetics

Lurie Children's Hospital

📍 Chicago, IL

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

Cincinnati Children's Hospital Medical Center

Cincinnati Children's

📍 Cincinnati, OH

👤 Boston Children's Hospital Rare Disease Program

🏨 Children's

Nationwide Children's Hospital Rare Disease Center

Nationwide Children's Hospital

📍 Columbus, OH

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

Travel Grants

No travel grants are currently matched to Isolated posterior meningocele.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Isolated posterior meningoceleForum →

No community posts yet. Be the first to share your experience with Isolated posterior meningocele.

Start the conversation →

Latest news about Isolated posterior meningocele

Source: PubMed + NIH RePORTER + openFDA + clinical-journal RSS · last 30 days · disease-tagged at ingest by AI extraction with human QC

No recent news articles for Isolated 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 Isolated posterior meningocele

What is Isolated posterior meningocele?

Isolated posterior meningocele is a rare congenital neural tube defect in which the meninges (the protective membranes surrounding the spinal cord) protrude through a defect in the posterior vertebral arches, forming a cerebrospinal fluid-filled sac beneath the skin. Unlike myelomeningocele, this condition does not involve herniation of spinal cord tissue or neural elements into the sac, which generally results in a more favorable neurological prognosis. The defect can occur at various levels of the spine, including thoracic, lumbar, and sacral regions. Clinical presentation varies depending

How is Isolated posterior meningocele inherited?

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

At what age does Isolated posterior meningocele typically begin?

Typical onset of Isolated posterior meningocele is neonatal. Age of onset can vary across affected individuals.

Frequently asked questions about Isolated posterior meningocele

Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.

  1. What is Isolated posterior meningocele?

    Isolated posterior meningocele is a rare disease catalogued in international rare-disease ontologies (Orphanet ORPHA:268810). It is typically inherited as multifactorial. Age of onset is generally neonatal. For verified primary sources, see the UniteRare Isolated posterior meningocele page.

  2. How is Isolated posterior meningocele inherited?

    Isolated posterior meningocele follows multifactorial inheritance. Genetic counseling is recommended for affected families to understand recurrence risk in offspring and the likelihood of unaffected siblings being carriers. Variants in the underlying gene(s) may be identified via clinical genetic testing.

  3. Are there FDA-approved treatments for Isolated posterior meningocele?

    Approved treatments for Isolated posterior meningocele are tracked from openFDA and DailyMed primary sources. Many rare diseases have no specific FDA-approved therapy; for those, supportive care and management of complications form the basis of clinical care. Orphan-drug-designation status is noted where applicable.

  4. Are there clinical trials for Isolated posterior meningocele?

    Active clinical trials for Isolated posterior meningocele are tracked daily from ClinicalTrials.gov. Trial availability changes frequently; check the UniteRare trial listings for the current count and recruitment status. Sponsors of rare-disease research often welcome inquiries even when a trial is not actively recruiting at a given moment.

  5. How do I find a specialist for Isolated posterior meningocele?

    Verified Isolated posterior meningocele specialists are identified through ClinicalTrials.gov principal-investigator records, peer-reviewed publication authorship (via PubMed), and the NPPES NPI registry. NORD-designated Centers of Excellence and NIH-affiliated rare-disease clinics are also tracked. UniteRare's specialist directory is updated continuously as new evidence becomes available.

See full Isolated posterior meningocele page for complete clinical details, sources, and verified-specialist listings.

Cite this page

Select a citation format above to view and copy.