Hello. I’m in need of emotional support lately. I’m a 23-year survivor of an AVM burst when I was a kid. I now have a little daughter of my own and any time she has any type of headache, nosebleed, etc, (Things that are normal but could not be) I freak out. No one around me understands my trepidation. I have taken her to the doctor when needed and things seem OK. I know my own trauma has a lot to do with this fear.
I know how challenging my life has been and I want better for her. I went from a perfectly healthy child to having my world turned upside down and still live the effects of my lost vision, muscle spasms every day.
I remember after having my AVM feeling so scared that it would happen again and I’m living it all over again. Thank you for letting me process this here. It’s very difficult to discuss with anyone who hasn’t been through this. Thanks for listening
Hi, and its great you reached out. I think about my AVM and my fear for my kids who were 10 ad 12 at the time. The more research I did the more at ease I was that it was extremely unlikely they too would have an AVM. That didn’t rule out all the other concerns after having gone through the bleed that I did. I think I understand to some degree being a parent, and having had the AVM experience. I don’t imagine anyone who hasn’t experienced something similar would understand, it adds another level of fear and questioning. I thin what you are experiencing is normal for us, but abnormal for most others! Take Care, John.
Get her an MRI
I completely understand this. I have boy/girl twins and I’m always concerned about the chance for them and what I can do to be proactive about prevention. How you feel is completely normal. Explain this to the pediatrician and if they care, they will understand and address your concerns. Never feel bad for advocating for your health!!! 
@aruski22 i understand completely as I have 3 children under the age of 6… my eldest has had some learning challenges where he forgets simple instructions & this really worries me… I try not to think about it so much & take one step at a time.
If there is an issue we will eventually find out & I refuse to go looking for them with my kids cause it’s scary, however know my personal experience has contributed to those feelings… at the end of the day no matter how much we stress over it ultimately we can’t change it if something was wrong & figure it’s unnecessary stress we put on ourselves when there is no proof they have any AVM issues… God bless!
@aruski22 Being a mom you will of course always worry about your daughter no matter her age and as a survivor of an avm burst you know what to look out for probably more than most doctors so of course you are going to have PTSD from being a survivor and wondering if this had passed onto your child.
Doctors always think they know our bodies or our childrens bodies better then us. You know the symptoms to watch out for and can advocate for your daughter which is great that she has you to monitor her -
For the most part AVMs do not usually run in families, but somewhere on the order of 5% of AVMs may be due to autosomal dominant inheritance of a genetic mutation, most commonly hereditary hemorrhagic telangiectasia or the capillary malformation- AVM syndrome. So not sure if this is the type that you had but if so that you can ask for the scans to ease your mind.
Medical PTSD is a real thing and finding a therapist to help build the tools to help deal with it can be hard, We never get rid of the PTSD but learn to deal with it.
We are here for you
Hugs Angela