Overview
Transitional extramedullary conus spinal cord lipoma is a very rare type of spinal lipoma, which is a fatty growth (lipoma) that develops near the lower end of the spinal cord, in the area called the conus medullaris. The term 'transitional' refers to the specific way the lipoma connects to the spinal cord, and 'extramedullary' means the fatty tissue is located outside the spinal cord itself but is attached to it. This condition is a form of spinal dysraphism, meaning the spine did not close completely during early development in the womb. This type of lipoma can cause problems by tethering (pulling on) the spinal cord, which can lead to neurological symptoms affecting the legs, bladder, and bowel function. Symptoms may include leg weakness, difficulty walking, changes in sensation in the lower body, bladder or bowel control problems, and sometimes back or leg pain. Some patients may also have visible skin changes on the lower back, such as a dimple, tuft of hair, or fatty lump. Treatment typically involves neurosurgical evaluation and, in many cases, surgery to release the tethered spinal cord and remove as much of the lipoma as safely possible. The goal of surgery is to prevent worsening of neurological symptoms. Long-term follow-up with a multidisciplinary team is important, as some patients may experience symptom recurrence over time. Early diagnosis and intervention generally lead to better outcomes.
Key symptoms:
Leg weaknessDifficulty walking or changes in gaitNumbness or tingling in the legs or feetBladder control problems such as incontinence or difficulty urinatingBowel control problemsBack pain or leg painVisible fatty lump on the lower backSkin dimple or tuft of hair on the lower backFoot deformities such as high arches or curled toesUneven leg length or muscle sizeScoliosis or curvature of the spineRecurrent urinary tract infections
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Transitional extramedullary conus spinal cord lipoma.
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Specialists
View all specialists →No specialists are currently listed for Transitional extramedullary conus spinal cord lipoma.
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 Transitional extramedullary conus spinal cord lipoma.
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 of the spinal cord, and is surgery recommended now or can we monitor it?,What are the risks and benefits of surgery for my specific situation?,What neurological functions are most at risk if we wait to treat?,How will bladder and bowel function be monitored and managed?,What is the chance of the spinal cord re-tethering after surgery?,What therapies or rehabilitation will be needed after surgery?,How often should follow-up MRI scans and neurological exams be done?
Common questions about Transitional extramedullary conus spinal cord lipoma
What is Transitional extramedullary conus spinal cord lipoma?
Transitional extramedullary conus spinal cord lipoma is a very rare type of spinal lipoma, which is a fatty growth (lipoma) that develops near the lower end of the spinal cord, in the area called the conus medullaris. The term 'transitional' refers to the specific way the lipoma connects to the spinal cord, and 'extramedullary' means the fatty tissue is located outside the spinal cord itself but is attached to it. This condition is a form of spinal dysraphism, meaning the spine did not close completely during early development in the womb. This type of lipoma can cause problems by tethering (
How is Transitional extramedullary conus spinal cord lipoma inherited?
Transitional extramedullary conus spinal cord lipoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.