Overview
Fibroneural non-saccular limited dorsal myeloschisis is an extremely rare congenital spinal cord defect. It belongs to a group of conditions called limited dorsal myeloschisis (LDM), which are a type of spinal dysraphism — meaning the spine and spinal cord did not form properly during early development in the womb. In this specific subtype, a stalk of fibrous and neural tissue connects the spinal cord to the skin surface through a defect in the back, but unlike some other forms, it does not form a sac (non-saccular). The "fibroneural" part means the stalk contains both fibrous (connective) tissue and nerve tissue elements. This condition is present at birth and is usually noticed as a skin abnormality on the baby's back, such as a dimple, skin tag, or unusual patch of skin. The spinal cord may be tethered (held in place abnormally) by this stalk, which can lead to neurological problems over time, including weakness in the legs, changes in bladder or bowel function, and pain. Diagnosis is typically made through imaging studies such as MRI. Treatment usually involves neurosurgery to release the tethered spinal cord and remove the abnormal stalk, which can help prevent worsening neurological symptoms. Early detection and treatment generally lead to better outcomes.
Also known as:
Key symptoms:
Skin abnormality on the back such as a dimple, skin tag, or discolored patchTethered spinal cordLeg weaknessDifficulty with bladder controlDifficulty with bowel controlBack pain or leg painAbnormal gait or difficulty walkingNumbness or tingling in the legs or feetFoot deformities such as clubfootScoliosis or curvature of the spineMuscle wasting in the legs
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
2 eventsAssistance Publique - Hôpitaux de Paris
Azienda USL Reggio Emilia - IRCCS
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Fibroneural non-saccular limited dorsal myeloschisis.
2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Specialists
View all specialists →No specialists are currently listed for Fibroneural non-saccular limited dorsal myeloschisis.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Fibroneural non-saccular limited dorsal myeloschisis.
Community
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Caregiver Resources
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Family & Caregiver Grants
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Social Security Disability
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Questions for your doctor
Bring these to your next appointment
- Q1.How severe is the tethering of my child's spinal cord?,When should surgery be performed, and what are the risks?,What neurological outcomes can we expect after surgery?,How often will follow-up MRI scans be needed?,What signs of re-tethering should I watch for after surgery?,Will my child need physical therapy or other rehabilitation?,Are there any long-term bladder or bowel concerns we should plan for?
Common questions about Fibroneural non-saccular limited dorsal myeloschisis
What is Fibroneural non-saccular limited dorsal myeloschisis?
Fibroneural non-saccular limited dorsal myeloschisis is an extremely rare congenital spinal cord defect. It belongs to a group of conditions called limited dorsal myeloschisis (LDM), which are a type of spinal dysraphism — meaning the spine and spinal cord did not form properly during early development in the womb. In this specific subtype, a stalk of fibrous and neural tissue connects the spinal cord to the skin surface through a defect in the back, but unlike some other forms, it does not form a sac (non-saccular). The "fibroneural" part means the stalk contains both fibrous (connective) tis
How is Fibroneural non-saccular limited dorsal myeloschisis inherited?
Fibroneural non-saccular limited dorsal myeloschisis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Fibroneural non-saccular limited dorsal myeloschisis typically begin?
Typical onset of Fibroneural non-saccular limited dorsal myeloschisis is neonatal. Age of onset can vary across affected individuals.
Are there clinical trials for Fibroneural non-saccular limited dorsal myeloschisis?
Yes — 2 recruiting clinical trials are currently listed for Fibroneural non-saccular limited dorsal myeloschisis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.