Living with Lipomyelomeningocele
A rare birth difference of the spine in which a fatty lump extends through the back, usually in the lower spine.
Understanding Lipomyelomeningocele
The painless lump can occur anywhere along the spinal canal but is usually in the lower back or sacral region. If left untreated, it can cause tethered cord syndrome.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes these features:
- Painless fatty lump on the back
- Tethered cord syndrome (if untreated)
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
Your doctor may refer you to a specialist who knows rare conditions.
- 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
- A doctor familiar with rare conditions, plus specialists as needed
- 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 doesn't describe a cause for this condition yet.
Patient organizations
- Spina Bifida AssociationLipomyelomeningocele · United States
You are more than your diagnosis
Perspectives from people navigating life with Lipomyelomeningocele.
Explore research for Lipomyelomeningocele
Explore actively recruiting Lipomyelomeningocele studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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