Hi, I'm Marsha. I recently joined and posted in the Parents of AVM group, but wanted to introduce myself here as well. Our 10-year-old daughter Katie had a brain hemmorhage at the end of February, and that's how we discovered her AVM. It is in the cerebellum and is less than a centimeter in size. After almost three weeks in the hospital she came home and is doing amazingly well. She is back at school and feels great physically, but is of course worried about the AVM. She told me she is afraid it is going to "pop" again, and that's a pretty heavy thing for a 10-year-old (or anyone!) to have to carry around. She is going to have a CT angiogram next week and then the doctors will decide whether to do surgery or radiosurgery. I know I will have lots of questions for you all in the coming weeks, and I'm thankful to have found you. You are all an inspiration to me, and I pray for everyone on this site each time I pray for my daughter, which is a lot! I look forward to getting to know you all.
Hi Marsha, welcome to this part of the site! Everyone here is such a brilliant support network and will be only too happy to answer any questions, I know I have had - and will no doubt continue to have - may, many questions.
I’m sorry to hear about your daughters diagnosed avm and the haemmorage she had and I understand it is such a worrying time. It is bad enough for those of us who have it ourselves, but I imagine it is worse when it is your child, as is anything. It sounds like you’re all coping really well, and hopefully the angio she is due to have will allow you to move forward with this and prepare for the next steps ahead. I’ve found the worse part is the waiting in a strange way, I think once you find out about this its such a big shock and you just want all the treatments that are talked about to you over with so you can get on with your life.
I wish your daughter and yourself and your family all the best. Stay positive!