AVM Survivors Network

Why I haven't been here, why I'm here today, and why I'm writing this post


Deb C.,

We are here to comfort one another in difficult times such as enduring the pain associated with the passing of a loved one. I found comfort in the tragic loss of my mother simply by writing a poem that the minister used as the basis for his sermon.



Thanks for commentting and sharing, Rob.

Take care,


If I can offer just a bit of comfort to you about your daughter's friend Amy...when I had my AVM bleed, I clinically died on the way to the hospital. Except for the onset of severe pain in the first few seconds, I was taken away from my pain and sorrow and found myself in heaven. I was sent back with a mission to let others know not to fear death. Amy is in a fabulous place filled with unconditional love. It is a goal of this group to spread the word so that doctors can save more lives and family members can recognize symptoms, but each one of us can make a difference. Your post rings out to many who recognize and can relate to your feelings. It is a feeling of being very alone sometimes with an AVM and even of helplessness. You want a purpose, you want to change the bad experience of an AVM but they are so rare and so individual, you can't find a place surrounded by your peers. But again, know that your feelings are similar to a LOT of people who have experienced the same things because of this rare and yucky disorder. That's what makes this website so great, and I hope you'll come back and share with us as you can.


Hi Kat,

I do indeed feel that Amy is now in a fantastic place. I know she will always be with everyone in spirit. Thanks for responding.

Take care,


Hi Deb, I’m so sorry to hear about Amy. My father died unexpectedly of an aneurysm many years ago and my husband’s AVM just ruptured 10 days ago (he is on the long recovery road) so I know the pain and sadness of unexpected loss. Sometimes doctors are too quick to brush off symptoms in someone young. Perhaps through sites like this we can raise awareness and effect change.


Hi Patty,

I couldn't agree with your more. I'm glad this site is here for both people who have been affected by AVMs and to make others aware of them. Thanks for responding.

Take care,


Welcome back Debbie, even if it is only occasionally. I also only get on occasionally. Any posting is helful to someone. (as you can see by the responses you have received) I am sorry to hear about Amy. - Take care - Cindy


Hi Cindy and Jim,

Thanks for responding. Cindy, thanks for your condolences concerning Amy. While her sudden death is still confusing to me, I feel she is at peace with God. Jim, love u 2 and think of you and love hearing what you're up to.

Take care,


I am so sorry that you lost Amy, that is a shame, I wish they would have ordered the tests that could have saved her. I was lucky to have found my AVM early, and although it meant missing out on my Junior, Senior year and many other things, I am here, I survived, and I live to try and figure out how best to help other's who have to struggle through an AVM, and all of the other things I have gone through.
It doesn't matter where your AVM was, you are still a part of this community, listen to me on my first day here, lol. We will appreciate whatever you have to offer because your voice, you experience helps us to understand you, me, us as a whole.


I see that you posted this back in August. I hate that I missed this post because I really want to reply to this. First and foremost I am so sorry to hear about the tragedy. I realize that can be very upsetting for everyone involved. Second, I wanted to say that you are a very vital part of the community whether or not you respond to posts or however you define your responsibility as a moderator. Most importantly, know that you are loved and respected by many (including me) and if you need time for yourself, that is more than ok. Thank you for the update and know that no matter how active you are, you definitely have a positive affect on others. Hang in there and take care of yourself. :J


Sorry I didn't respond sooner. I haven't been back here as much as a thought I would be after writing this post.

I am happy that your AVM was found and that you've joined our group. I especially thank you for feeling that my viewpoint, even though different from others, does matter.

Take care,


Hi Suzy,

I appreciate that you took the time to comment, and I'm sorry I didn't respond earlier. I had hoped to be on here more often, but it hasn't worked out that way.

Last week was really hard for Brent, my daughter's boyfriend, because Amy would have celebrated her birthday on Oct. 8. But I know Amy is with God now and watches over Brent like she did when she was here on earth.

Take care,


You are welcome Deb and feel free to take all the time you need. Birthdays for loved ones that are no longer here with us are always sad :(. They only serve as reminders. Hang in there, we always have your back! :J


Thanks, Suzy. Want to let you know you are doing a great job as a moderator on here.

Take care,


Thanks Deb. Wishing you and yours the very best. Especially in tough times. Hang in there. :J


Thank you. You view-points will always be important no matter what any one thinks or does because you lived it!


I just came across your post while searching for information on anerysums. I have a brain avm and recently experiencing tingling in my arms and hands. May be carpol tunnel but with the avm I am concerned. Now I have felt a sharp pain in my head and once a burning sensation. I don’t want to overreact and go to the ER but also want to know what is going on in my head. I am looking for help and suggestions —dr said to let him know if it happens again or if my vision changes.