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AVM Survivors Network

Received Shocking News today...2nd AVM!


#21

Funny, I am not Jewish but I am surrounded by them all day long…I work at a Jewish day school I will take prayers for my daughter from anyone and any religion. Thank you for your support, still trying to process the news.


#22

This second AVM has been there since we discovered the first one, they just did not see it on Echo. There was lots of speculation as to why she had an enlarged left coronary artery and now we know it is because of this new AVM. Thank you for your support. We are still just trying to process this new information and figure out the best way to break the news to her, she is not going to be happy.


#23

I am so sorry to hear about your husband, I can’t imagine him living with all those ticking time bombs. My baby girls has a huge AVM at the base of her spine that has cause havoc. With the diagnosis of this new AVM we are exploring whether or not she may have HHT. Thank you for your support. We will get through this.


#24

Thank you for your support. I see from all the responses that this is not unheard of and have gotten so great advice. We will be looking into having her tested for HHT. Right now we are just trying to process this new development and figure out the best way to tell our daughter.


#25

Thank you for the link. We are talking to her doctor about meeting with a geneticist to explore whether she may have HHT. In the mean time we are just trying to come to grips with this new development and how best to tell our daugher.


#26

Thank you, she is a fighter. I still don’t know how we are going to break the news to her…she is in therapy for PTSD from the first one. Some how we will get through this.


#27

I truly feel for you, as a mother, and her , as a kid coming to terms with growing up.

Every time I feel my brain bleed or have another scan I cry, and I’m 34 now.

I hope she can come to terms with it quickly. More so, I hope her doctors have a REALLY good game plan AND FAST.

They never should have missed this and I hope to God it’s not something they knew was there but never told you so they could just monitor it and see what happened.

NO child deserves to be a test subject.

I just had to tell my own doctors I’ve been s lab rat before for my last team and refuse to do it again.