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AVM Survivors Network

Nicholas


#21

Hi Klee. I also want to offer my condolences.

I also wanted to say: I'm 52 and I've had a few concussions in my lifetime. One of them I was in a coma for a few days. When my Avm was discovered (in 1991), my drs told me that the concussions had nothing to do with it, that we are born with them. Many people don't even know they have one until it gives them some kind of trouble and the drs order an MRI.

AVM's are a tricky thing. Because the blood vessel walls are thinner than a healthy blood vessel. The possibility of them bleeding at any given moment without a notice is there. And anything that raises the blood pressure and the heart rate, raises the risk of it bleeding or rupturing.

I hope this helps you somewhat.

Ben


#22

Klee, I feel like your looking for the same kind of answer that I'm looking for. We're just looking for them from different sides of the fence. April 2009 I'm watching tv with my son's friend when next thing I hear is a faint voice telling me I'm going to a rehab! After that there's flashes of memory for me of a place I don't know, people I don't know, a whole life I don't know...but I accept because I don't miss anything and nothing is scaring me. I didn't know I suffered an AVM out of the blue that burst and bleed, that it caused me to have seizures and strokes to the point the dr's told my family they weren't sure I was going to make it. I was in a coma for a week, but when I came too I was two different people. (Another story) I was in rehab for a while then had to live with my sister, then had gamma knife surgery which was a god send. I started to remember. But then I had a number of seizures and strokes over the next three years and long story short, I've survived! I'm permanently disabled for life but god kept me here for a reason. Just like he took your son for a reason. I'm still trying to figure out why I'm here and to do some good with this life he's spared me to live. And I can't find it Klee! My doctor explained to me that AVM's are not necessarily hereditary and that its not at all unusual for people to have them and not be aware. He said I might well have had mine since birth. Nobody really knows. So with no explanation about the why of it, I'm trying to figure out what I can do to help others. Its hard some days, other days I feel stronger! With you, I feel I should tell you you raised an amazing individual! One who is now safely placed in the arms of God! When you think about it and really look around at the world we live in today you know he is! When you think about wanting your child to be safe and loved, then know he is that with god. And God is Everything. You don't need to worry about him, he's watching over you now! This is only a temporary separation. And always remember, YOU WILL see him again someday! Stop looking for answers to questions you won't get and turn your heart and soul to the love and precious memories you were granted with him and your family! When you think of those times, you'll feel him with you! He never left! :) He's all around you, just in a different way. God Bless to you and Yours! :) P.S. This is one of my stronger days...:)


#23

Klee, I too am sorry for your loss. As others have said, my AVM is congenital, which means I was born with it but it’s not hereditary. In my case I had no symptoms for 25 years, I started having seizures while pregnant with my son. The AVM was triggered by the change in hormones and I had a stroke at 8 months pregnant. I woke up in ICU 2 months later to find out my son had passed away 12 days after the stroke and emergency c-section, but the loss of oxygen left him with severe brain damage so that his body shut down and I never got to meet him. I was so angry and searching for answers, searching for someone to blame, and 7 years later I miss him every day and continue to struggle with the side effects of the AVM.
I can’t answer your question about the previous surgery causing the hemorrhage, but I understand the feeling of loss and hope you know you’re not alone in the abyss of understanding AVM symptoms.