Hello! Anyone in Portugal with whom I may exchange more local experiences? I’m sure we’re many patients here as well, but I’ve not met anyone yet. It would be great if we could start a Portuguese AVM awareness community. Not sure where to start looking. Thank you.
I live in Portugal (Lisbon) but I ended up having to go to london for my treatment.
Hello, Angela! Are you Portuguese? Can I ask why did you have to go to London? Are you from there? I’m from Porto and I got assisted by the public health system.
Hi Berta, I have an AVM in my elbow which is quite difficult to treat. Currently waiting for another surgery. I’m from the uk originally but moved here Jan 2022 - unfortunately I still speak limited Portuguese! I can share my doctors details if you’re interested or know anyone else with an limb AVM.
And @lgz is Portuguese but lives in Germany, I think.
Thank you so much! I’ll try to reach them.
Hello, just joined the community. My son has been recently diagnosed with a brain AVM.
Welcome Moriko, This site is a good place to get support and info. We’ve all been through it in one form or another.
Judging from your age, your son is probably around the same age (14) when I had my AVM bleed and 2 craniotomies, and seizures ever since. So I can relate to what your son is feeling.
It would be great if you had a doctor friend or therapist to talk to. Not as a professional but just to get their reaction and advice. It’s hard for him going through the pain and fear. For me there was also anger and shame that came later. We had a close family doctor friend that would come sit with me in the hospital. It was perfect for me because he understood what I was going through.
As far as the information/advice part, there’s an amazing amount of worldwide experience here. Best wishes, Greg