Overview
Fibrolipomatous filum anomaly is a rare condition that affects the filum terminale, which is a thin, thread-like structure at the bottom of the spinal cord. In this condition, the filum terminale contains abnormal amounts of fat (lipoma) and fibrous tissue, making it thicker and less flexible than normal. This anomaly is closely related to a group of conditions known as tethered cord syndrome, where the spinal cord is pulled or held in an abnormal position, which can restrict its movement and stretch the delicate nerve tissue. People with this condition may experience lower back pain, leg weakness, numbness or tingling in the legs, bladder or bowel problems, and changes in how they walk. Symptoms can appear in childhood or may not become noticeable until adulthood, sometimes worsening during growth spurts or with physical activity. The condition is typically discovered through MRI imaging of the spine. Treatment usually involves neurosurgical intervention to release the tethered spinal cord by cutting or sectioning the thickened filum terminale. This surgery aims to prevent further neurological damage. When diagnosed and treated early, many patients experience improvement or stabilization of their symptoms. Ongoing monitoring by a neurosurgeon and neurologist is important to watch for any recurrence of tethering or progression of symptoms.
Key symptoms:
Lower back painLeg weaknessNumbness or tingling in the legs or feetDifficulty controlling the bladderDifficulty controlling bowel movementsChanges in walking or gaitFoot deformities such as high arches or curled toesScoliosis or curvature of the spinePain that worsens with physical activityTightness in the leg musclesRecurrent urinary tract infectionsDifficulty with balance
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Fibrolipomatous filum anomaly.
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Specialists
View all specialists →No specialists are currently listed for Fibrolipomatous filum anomaly.
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 Fibrolipomatous filum anomaly.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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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.
Questions for your doctor
Bring these to your next appointment
- Q1.How severe is the tethering, and is surgery recommended now or should we wait and monitor?,What are the risks and benefits of filum terminale sectioning surgery?,What symptoms should I watch for that would indicate the condition is getting worse?,Will my child need long-term follow-up after surgery, and how often?,Are there any activity restrictions before or after treatment?,Could this condition be related to any other spinal abnormalities?,What specialists should be part of my ongoing care team?
Common questions about Fibrolipomatous filum anomaly
What is Fibrolipomatous filum anomaly?
Fibrolipomatous filum anomaly is a rare condition that affects the filum terminale, which is a thin, thread-like structure at the bottom of the spinal cord. In this condition, the filum terminale contains abnormal amounts of fat (lipoma) and fibrous tissue, making it thicker and less flexible than normal. This anomaly is closely related to a group of conditions known as tethered cord syndrome, where the spinal cord is pulled or held in an abnormal position, which can restrict its movement and stretch the delicate nerve tissue. People with this condition may experience lower back pain, leg wea