Overview
Cerebral sinovenous thrombosis (CSVT), also called cerebral venous sinus thrombosis or dural sinus thrombosis, is a condition where blood clots form in the large veins (called sinuses) that drain blood from the brain. Unlike the more common type of stroke caused by a blocked artery, CSVT affects the venous drainage system. When these veins are blocked, blood cannot drain properly from the brain, which causes pressure to build up inside the skull. This can lead to swelling, bleeding, and damage to brain tissue. CSVT can affect people of any age, from newborns to older adults, though it is more common in women of childbearing age and in newborns. Symptoms can come on gradually or suddenly and may include severe headache, vision changes, seizures, weakness on one side of the body, and confusion. Because symptoms can look like other conditions, CSVT is sometimes missed or diagnosed late. Treatment usually involves blood thinners (anticoagulants) to stop the clot from growing and allow the body to dissolve it over time. Most people recover well with prompt treatment, but some may have lasting effects depending on how severe the clot was and how quickly it was treated. Ongoing research is exploring better ways to manage this condition and prevent it from coming back.
Also known as:
Key symptoms:
Severe or unusual headache, often described as the worst headache of one's lifeSeizures or convulsionsWeakness or numbness on one side of the bodyBlurred or double visionConfusion or difficulty thinking clearlyNausea and vomitingDifficulty speaking or understanding speechDrowsiness or reduced level of consciousnessSwelling of the optic nerve causing vision problems (papilledema)Ringing in the ears or pulsating soundsSensitivity to lightLoss of coordination or balance problems
Multifactorial
Caused by a mix of several genes and environmental factors
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Cerebral sinovenous thrombosis.
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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 Cerebral sinovenous thrombosis.
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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.What caused my CSVT, and do I need testing for an inherited clotting disorder?,How long will I need to take blood thinners, and which type is best for me?,What are the warning signs that the clot is getting worse or that I am having a recurrence?,Are there activities I should avoid while on blood thinners or during recovery?,If I am a woman of childbearing age, how does CSVT affect my options for contraception and future pregnancy?,What long-term follow-up do I need, and what specialists should I see regularly?,Are there any clinical trials or new treatments I should know about?
Common questions about Cerebral sinovenous thrombosis
What is Cerebral sinovenous thrombosis?
Cerebral sinovenous thrombosis (CSVT), also called cerebral venous sinus thrombosis or dural sinus thrombosis, is a condition where blood clots form in the large veins (called sinuses) that drain blood from the brain. Unlike the more common type of stroke caused by a blocked artery, CSVT affects the venous drainage system. When these veins are blocked, blood cannot drain properly from the brain, which causes pressure to build up inside the skull. This can lead to swelling, bleeding, and damage to brain tissue. CSVT can affect people of any age, from newborns to older adults, though it is more
How is Cerebral sinovenous thrombosis inherited?
Cerebral sinovenous thrombosis follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat Cerebral sinovenous thrombosis?
16 specialists and care centers treating Cerebral sinovenous thrombosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.