Living with Lateral meningocele syndrome
A genetic condition with sacs of spinal membranes pushing out through gaps in the spine, affecting nerves, bladder, and bones.
Understanding Lateral meningocele syndrome
Lateral meningoceles are protrusions of the membranes around the spinal cord through gaps in the spine bones, most often in the lower spine. They may damage nerves, causing bladder control trouble, tingling, leg stiffness and weakness, and back pain. Infants may have delayed motor skills and low muscle tone. Intelligence is usually unaffected. Joint looseness, hernias, and spine differences are also common, along with a pattern of facial features. It is noticed in newborns and infants.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Spinal membranes pushing out through the spine
- Bladder control trouble
- Leg stiffness and weakness
- Very flexible joints
- Hearing loss from ear differences
- Hernias
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.
- 3Consider genetic testing
Changes in NOTCH3 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
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
Changes in the NOTCH3 gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene is enough to cause it.
Also known as: lehman syndrome; lmns
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 Lateral meningocele syndrome.
Explore research for Lateral meningocele syndrome
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