Anyone with a left temporal lobe AVM and living in the UK?

Can you tell me your story?

I am post diagnosis, waiting for my first angiogram and have been told my options are gamma knife or craniotomy. I have no idea what option to choose and what the recovery will be like. I have a 19 month old son and this will affect him greatly. Thinking of him and his wellbeing will influence my decision. Also, my decision will be influenced by the strong desire to have more children in the future. I really don’t what this choice to be taken away.

Any stories of any route you took, and where you had treatment, will be gratefully received. Sx

Hi Sarah, I think I can relate to your story but for me it was right temporal lobe and I live in the UK also, mine bled resulting in a haemorrhage and emergency craniotomy, 2 weeks in hospital , when I checked out I thought I was good to go, but then came to know and realise that I still had my AVM and needed further treatment, I was told that the best option was craniotomy again!, for me that was the one thing I didn’t want !, thought what’s the chances of a person coming out of 2 brain surgeries OK ??, but that’s exactly what happened , 7 months after my first craniotomy I had my second and after 1 week in hospital I went home and felt fine, I was working after 8 weeks but light duties , it’s a total success story , with gamma knife it’s a long process before you get the all clear, with craniotomy it’s more invasive but you know very quickly that you are AVM free , hope this post has helped :slight_smile:

Take care
Martin.

Hi there I too had left temporal lobe avm and the best option choosen was cyberknife surgery.as the portion was inoperable.if your portion is operable and is less risky then craniotomy can be the good option as no post surgical symptoms can be seenand is completely removed.if risky then may be cyberknife works out though takes long time.