OBSOLETE: Foix-Alajouanine syndrome

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ORPHA:79093
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Overview

Foix-Alajouanine syndrome is a rare condition that affects the spinal cord. It is caused by an abnormal tangle of blood vessels on or near the spinal cord, called a spinal dural arteriovenous fistula (SDAVF). This abnormal connection between arteries and veins causes blood to back up and pool around the spinal cord, reducing the oxygen supply to nerve tissue. Over time, this leads to damage of the spinal cord itself. The condition is sometimes called subacute necrotic myelitis or angiodysgenetic necrotizing myelopathy, reflecting the fact that it causes gradual tissue damage in the spinal cord. The most common symptoms include slowly worsening leg weakness, numbness or tingling in the legs, and problems with bladder and bowel control. Many people also experience back or leg pain. Because symptoms come on gradually and can look like other spine conditions, diagnosis is often delayed. The condition mainly affects middle-aged and older adults, and men are affected more often than women. Treatment focuses on closing off the abnormal blood vessel connection, either through a minimally invasive procedure called endovascular embolization or through open surgery. Early treatment gives the best chance of stopping further damage and allowing some recovery of function. Without treatment, the condition tends to get worse over time. It is now considered an outdated or 'obsolete' diagnostic label in some medical classification systems, as the underlying cause — spinal dural arteriovenous fistula — is now better understood and more precisely named.

Also known as:

Key symptoms:

Slowly worsening weakness in the legsNumbness or tingling in the legs and feetDifficulty walking or unsteady gaitLoss of bladder controlLoss of bowel controlBack pain or leg painFeeling of heaviness in the legsMuscle stiffness or spasticity in the legsSexual dysfunctionSymptoms that worsen with physical activity or standing

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for OBSOLETE: Foix-Alajouanine syndrome.

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No actively recruiting trials found for OBSOLETE: Foix-Alajouanine syndrome at this time.

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No specialists are currently listed for OBSOLETE: Foix-Alajouanine syndrome.

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 OBSOLETE: Foix-Alajouanine syndrome.

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Community

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Latest news about OBSOLETE: Foix-Alajouanine syndrome

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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.Has the abnormal blood vessel connection been fully closed, and how will we know if it comes back?,How much of my current weakness and numbness is likely to improve after treatment?,What rehabilitation therapies do you recommend, and how soon should I start?,How should I manage my bladder and bowel problems, and who can help me with this?,What warning signs should prompt me to go to the emergency room?,Are there any clinical trials or new treatments I should know about?,How often do I need follow-up imaging to make sure the fistula has not returned?

Common questions about OBSOLETE: Foix-Alajouanine syndrome

What is OBSOLETE: Foix-Alajouanine syndrome?

Foix-Alajouanine syndrome is a rare condition that affects the spinal cord. It is caused by an abnormal tangle of blood vessels on or near the spinal cord, called a spinal dural arteriovenous fistula (SDAVF). This abnormal connection between arteries and veins causes blood to back up and pool around the spinal cord, reducing the oxygen supply to nerve tissue. Over time, this leads to damage of the spinal cord itself. The condition is sometimes called subacute necrotic myelitis or angiodysgenetic necrotizing myelopathy, reflecting the fact that it causes gradual tissue damage in the spinal cord

How is OBSOLETE: Foix-Alajouanine syndrome inherited?

OBSOLETE: Foix-Alajouanine syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does OBSOLETE: Foix-Alajouanine syndrome typically begin?

Typical onset of OBSOLETE: Foix-Alajouanine syndrome is adult. Age of onset can vary across affected individuals.