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Diagram of cerebral aneurysm, that had formed on my own AVM
What is an AVM?
An arteriovenous malformation (AVM) is a tangle of blood vessels in the brain or on the brain surface. This causes blood to bypass the usual network of vessels and flows directly from arteries to veins.
What are the symptoms?
Symptoms may vary depending on the size and location of the AVM within the brain. While AVMs commonly cause no symptoms at all, they can lead to seizures, headaches, speech disturbances and visual disturbances. They can also be located in other parts of the body.
What causes AVMs?
It is not fully known why AVMs occur, but generally people are born with them. They are not thought to be hereditary. They are typically discovered between the ages of 20 and 40.
A video showing and explaining what AVMs are.
How can I help?
The consultant neurosurgeon, Professor Diederik Bulters who carried out my operation at University Hospital Southampton NHS Foundation Trust, is a leading research figure in subarachnoid haemorrhage (SAH). His current study is called: Risk of Aneurysm Rupture (ROAR).
A SAH is a life‑threatening type of stroke caused by bleeding into the space surrounding the brain. It is usually the result of a ruptured brain aneurysm and is marked by a sudden, severe “thunderclap” headache. It is a medical emergency that requires immediate treatment, as it can lead to serious brain injury or death.
Image credit: Hellerhoff under CC licence 3.0
The Risk of Aneurysm Rupture (ROAR) Study aims to better understand how likely it is for a brain aneurysm to burst (rupture). They hope to give future patients clearer answers about their own risk and help them make more confident decisions about whether to treat their aneurysm or continue to monitor it through their lifetime.
There are lots of great charities helping with brain conditions. A charity currently trying to gain traction you could look at is called: HBA SUPPORT. Hereditary Brain Aneurysm Support, is here for people with brain aneurysms and families at increased risk of brain aneurysms.
Hereditary Brain Aneurysm Support (HBA Support) is the UK's first patient-centred charity dedicated to supporting people affected by brain aneurysms and families with increased or hereditary risk in the UK.
https://www.hbasupport.org/support
Please take a moment to take a look at the amazing work they are doing to help.
ROAR study
Website: https://roarstudy.co.uk/
British Brain and Spine Foundation
Address: 3.36 Canterbury Court, Kennington Park, 1-3 Brixton Road,
Crammer Road, London, SW9 6DE
Website: www.brainandspine.org.uk
Telephone: 0808 808 1000 (Information and support on neurological
disorders for patients, carers and health professionals)
Headway National Contact
Freephone: 0808 800 2244 (Monday to Friday: 9am - 5pm)
Email: helpline@headway.org.uk
Patient Information
Local Support groups for Headway
For further information email: headwaycw@aol.com
NHS Choices:
Website: www.nhs.co.uk
Stroke Association
Address: Stroke House, 240 City Road, London, EC1V 2PR.
Stroke Helpline
Telephone: 0303 303 3100 (Monday to Friday, 9am to 5pm)
Email: info@stroke.org.uk