Advancing awareness for Cerebral Venous Sinus Thrombosis.
AWARENESS • SUPPORT • EDUCATION • VOICE • HOPE • HELP • COMMUNITY • LISTEN • LEARN •
"Our Mission is to provide hope, help, and a voice for CVST survivors and their families"
One day we hope CVST won’t stop anyone from living the life they want.
Until then, we’re here to give practical support and advice to anyone in the UK who needs it.
Share your story of hope to help inspire others affected by CVST – click here
What is a CVST?
Cerebral Venous Sinus Thrombosis (CVST) is a rare and critical medical condition characterised by the formation of a blood clot within the brain’s venous sinuses – the channels that drain blood from the brain back to the heart. When the clot blocks blood flow, pressure builds up, which can cause swelling, bleeding, or even a stroke.
Typical locations for blood clots from CVST include your:
Transverse sinus.
Superior sagittal sinus.
Inferior sagittal sinus.
Sigmoid sinuses.
Cavernous sinus.
Deep sinuses of your cortex.
This blockage prevents oxygen-depleted blood from draining away from brain tissue, which can lead to increased intracranial pressure, brain swelling, and potential haemorrhage.
Because of its rarity and varied presentation, recognising the signs early is the most vital step in securing successful treatment and long-term recovery.
The hallmark of CVST is often its non-specific symptoms, which can lead to delays in diagnosis. Recognising warning signs such as persistent and worsening headaches, blurred vision, sudden seizures, or loss of motor function is paramount. We believe that by enhancing public and medical awareness, we can turn uncertainty into action—ensuring every patient receives the prompt, lifesaving care they deserve while navigating this complex diagnosis.
CVST is a condition that goes by many names! Because it affects the veins and sinuses of the brain, it is often referred to using different terminology depending on the context or medical focus.
You might hear it called:
Cerebral Venous Thrombosis (CVT)
Venous Stroke
Sinus Vein Thrombosis (SVT)
Dural Sinus Thrombosis
Venous Infarction
Regardless of what name is used, it describes the same condition. Understanding the different terms can help when researching, speaking to medical professionals, or sharing information with others. Knowledge is power, and awareness is the first step towards better understanding and support.
Know the Signs: Symptoms of Cerebral Venous Sinus Thrombosis (CVST)
Cerebral Venous Sinus Thrombosis (CVST) is a rare but serious condition where a blood clot forms in the brain's venous sinuses, blocking blood drainage and causing pressure to build up. Its symptoms can vary widely and sometimes mimic other conditions, so being aware of them is crucial.
Common Symptoms
• Severe headache: The most frequent symptom, often worsening over days or coming on suddenly like a "thunderclap". It may be the only sign in some cases.
• Nausea and vomiting: Often accompanying the headache due to increased pressure in the brain.
• Vision problems: Blurred vision, double vision, or even vision loss.
• Neurological changes: Weakness, numbness, or paralysis in the face, arm, or leg (usually on one side), difficulty speaking, understanding others, or coordinating movements.
• Seizures: Occur in about 40% of patients, more commonly in women during or after pregnancy.
• Confusion or cognitive issues: Trouble thinking clearly, memory problems, or changes in alertness.
• Loss of consciousness: In severe cases, this can happen, and in very serious situations, it may lead to coma.
Important Note
Symptoms can develop slowly or suddenly, and not everyone will experience all of them. If you or someone you know has any of these signs, especially a severe headache that feels different from usual, seek medical help immediately.
Early diagnosis and treatment are key to better outcomes.
This is for informational purposes only and does not replace professional medical advice. Always consult a healthcare provider for any concerns about your health.
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