AVM Survivors Network

Anyone having NHS problems?


I couldn’t choose a hospital, I tried Birmingham but they refused to see me. I think the problem is (and this is around the world) that here they wouldn’t touch my lip(it has since been operated on and replaced in America) and they don’t know how to stop arteries bleeding, so won’t go near them. Hence they cannot operate successfully on Facial AVM’s. My face is looking pretty good now and next is the AVM wrapped round my eye. Then hopefully fixing my nose that didn’t heal because of all the Onyx shovelled into me here. I lost virtually no blood during the massive ops there. So these things can be fixed (hopefully). The money has obviously been a huge issue, we are not wealthy. I’ve raised quite a lot on go fund me after the publicity. Peoples comments were wonderful and the generosity incredible. I’m supposed to be in a magazine soon as well. I’m always a positive person but the NHS was totally atrocious to deal with and massively stressful. I do not know what to suggest and I’m sorry your in exactly the same mess I found myself in. I so wish you well. Ps my family are all Scottish!!!


My experience is that you have to take charge of your discussions on AVM with doctors and consultants. There is a tendency to focus on the people who are in a trauma. Don’t be afraid to ask more questions. If you are unhappy with your consultant then get another in fact get another second opinion anyway. It’s important to have good relationship with your consultant as they will be around for some time. We found lots of scary stuff online but some good stuff in between. Our advice was do everything you normally would. So we did. We flew out daughter out skiing after her angiogram 12 hrs after and do you know what she loved it. She is doing life saving swimming course and all manner of stuff in between some periods of less comfortable moments. You are in charge demand more.


Treatment in the hospital was superb, after being discharged following the craniotomy I was just abandoned and left to cope on my own. No aftercare whatsoever. There are support groups out if you look on social media that are very good as well as this site