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AVM Survivors Network

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

#1

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?

#2

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.

#3

Generally very good but excruciatingly slow.

#4

My wife was finally diagnosed in 1999 after nearly 2 years of pushing to get her an MRI scan. Faye had always suffered from severe headaches and vacant episodes, her parents had tried for years to find a doctor that could tell them what the problem was with no results. Faye and I met in the summer of '99 and after some long talks I asked if she had had a brain scan, which she hadn’t. Soon after she had her first grande mal. When they got the results the medical team were shocked how far the AVM had progressed.
Faye tried loads of different drug treatments, some which sort of worked some that didn’t, Epilim made her put on 3 stone in 6 months! Apart from bi-annual assessments Faye receive no further treatment, the prognosis being that it was too dangerous to operate.
In 2007 Faye was put on a new drug that had just finished clinical trials and it was great, although her seizures had been reduced they still happened occasionally, since being put on the new drug she has been seizure free apart from the occasional petit mal.
In September this year Faye had a huge bleed that nearly killed her and has left her paralysed on the right side and with lowered brain function, up until this point we’d pretty much given up on medical treatment as we had hit a brick wall, now I had to switch back in to high gear to try and get everything sorted out. I had nothing but problems, Faye was shipped from one hospital to another, I was never given the full facts of what was going on even though I am her next of kin, I was given false or misleading information and in one hospital Faye was left on a high dependency ward for 2 months with no real care! After 2 more transfers she ended up in the ABI unit in Poole where staff tried to help her but by this time she just wanted to come home.
Although on paper we were offered loads of different help, nothing substantial has been put in place, luckily I have done plenty of research over the years and worked at one time with children and young people with physical and mental challenges so I have confidence in my ability to care for Faye but it does not take away from the fact that over the years very little medical help has been given and this most recent challenge has only lowered my expectations of the UK medical fraternity!

#5

That’s rollercoaster ride, have you looked at getting a second opinion at a hospital further afield? Its incredibly tough dealing with the administration of the NHS, it has felt like one of the 12 tasks of Asterix where Asterix gets a cart permit from the Roman Civil Service. Having been through a great deal of physical difficulty and pain fighting to be seen and persisting with chasing appointments has been the thing that has nearly broken me. But it has been worth persevering and as you say doing a lot of research. I wish the NHS was slightly different it has so much potential to be truly great.