Fibrolipomatous filum anomaly

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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

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Fibrolipomatous filum anomaly.

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No actively recruiting trials found for Fibrolipomatous filum anomaly at this time.

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

Search ClinicalTrials.gov ↗Join the Fibrolipomatous filum anomaly community →

No specialists are currently listed for Fibrolipomatous filum anomaly.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Fibrolipomatous filum anomaly.

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Community

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Latest news about Fibrolipomatous filum anomaly

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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