AVM Survivors Network

How have you found diagnosis and treatment in the U.K. and what has your aftercare been like?


In 2014 aged 34 I was diagnosed with an AVM after two grand mal seizures but years of debilitating migraine headaches that were said to be part of other conditions although I visited my GP several times in 2014 knowing that there was something not right. Has anyone else had difficulty like this in the UK?


Hi Laura. Unfortunately yes. It took several years and many appointments for my mum to convince my GP that my own debilitating headaches (starting at age 12) were not just migraines. She had a 6th sense about it. My GP insisted I try loads of different migraine tablets, all of which had no effect. As a last resort I was sent for a CT scan which showed severe hydrocephalus and was admitted to hospital as an emergency. The scan also showed a ‘birthmark on the brain’ which later turned out to be an AVM.


Generally very good but excruciatingly slow.