Great podcast. My daughter had an AVM rupture in July last year at the age of 9. She had to have life saving surgery. She's pulled through with very little defecit.
@Bill Gasiamis Thank you Bill, I suffer with PTSD as a result, constantly researching, constantly thinking about reoccurrence and it happening again because apparently recurrence can happen more so in children. Constantly thinking about the 'What ifs'. She had successful embolization and craniotomy and I just wish to have been told she's cured for life, not she's cured for life but we will monitor her for a few years incase of reoccurrence, even though I've been told reoccurrence is uncommon.
I had an AVM as well. 3 bleeds and surgery. I’d be happy to answer some of your questions if you would like to chat. We can do an interview( which will be really helpful for others) or we could do it offline. Let me know if your up for an interview.
@Bill Gasiamis yes Bill I would be open to chat about it and do the interview. Really trying to raise awareness. I'm in the UK, so I know timing will be hard. If you let me know some dates and times that you are free and we can hopefully chat. AVM reoccurrence is very well documented in the pediatric population as children are still growing.
Thank you so much for this video
I had AVM in 2021 and it was hard. You 2 are parents plus AVM must be really hard! You guys, wives and kids are tough!!!
Most welcome 😊
It was tough but we fought on.
Great podcast. My daughter had an AVM rupture in July last year at the age of 9. She had to have life saving surgery. She's pulled through with very little defecit.
So happy to read she doing great. How are you doing after that type of scare?
@Bill Gasiamis Thank you Bill, I suffer with PTSD as a result, constantly researching, constantly thinking about reoccurrence and it happening again because apparently recurrence can happen more so in children. Constantly thinking about the 'What ifs'. She had successful embolization and craniotomy and I just wish to have been told she's cured for life, not she's cured for life but we will monitor her for a few years incase of reoccurrence, even though I've been told reoccurrence is uncommon.
I had an AVM as well. 3 bleeds and surgery. I’d be happy to answer some of your questions if you would like to chat. We can do an interview( which will be really helpful for others) or we could do it offline. Let me know if your up for an interview.
Oh and btw an AVM reoccurrence I’ve never heard of. Some other conditions like a cavernous angioma can happen again.
@Bill Gasiamis yes Bill I would be open to chat about it and do the interview. Really trying to raise awareness. I'm in the UK, so I know timing will be hard. If you let me know some dates and times that you are free and we can hopefully chat. AVM reoccurrence is very well documented in the pediatric population as children are still growing.
Very good good poadcastc
thanks
This is so encouraging. Keep fighting.
Thanks for the comment Bajan. Hope you are doing well.
@@BillGasiamis Yes, just trying to push inspiration like you on my channel😊.
@@stepstoleaps well done. I see your page is coming along well, just keep at it, small steps.
@@BillGasiamis Will do. Thank you.