Hello my name is Bridet I am the mother of a child who had a AVM that leaked 3 years ago. I am looking for other parents out there who have been through this to see what information they have. things that they have been through learned etc. I havent been able to find munch on kids information so its all helpful. Thank you all for having me hear I am glad to have people that can relate to what is going on.
Bridget, we have a group for you here, called parents of AVM (see the link below). You can meet others in similar situations and read the discussions for more info. If you need more help, you’ll find all the members here very friendly and more than willing to assist. All the best!
I don't have much on leaks. Our daughter has an extremity AVM in her ankle/lower leg. She had a surgery/embolism a few years ago (2011-2012) which helped. It still bothered her some and has gotten worse in last 6 months or so, which doctor said might happen as she got a little older (15 now). She has another visit scheduled next month. We live in deep south, doctor is in NYC. All I can say is it's not easy but people here are fantastic. Prayers for you family.
Sorry it has been so long but the link doesn’t work anymore can you help me find a group for parents with kids who have had brain avm rupture
You can do a search on this page, possibly this one. I hope this helps.
Sharon from ModSupport
The modern link is here
Hello … My son used to had one you can check my story on the profile or just message me for anything you need.