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Permalink Reply by Angela on February 15, 2012 at 3:20am

Hello Hopeful
I can not tell you about AVM bleeds I have a dural fistula with a tiny connection that is bleeding. But last year I did have a rare stroke at 42 and was unresponsive for almost a week, After I had recovered some I told my husband and family what was going on...the earthquake in Japan and about my hospital room mates bladder cancer had spread. They could not believe I could hear and process when I was out of it. I could not talk and once I could I could see the words in my head but it was like lifting a heavy weight with each word and sometimes the word I wanted to say for some reason I could not. When I had my angiogram and embolism this Jan one of my biggest fears was not being able to talk and infact that is what happened. I started to sign but no one knew sign language so they grabbed my husband and he did not know sign language and had no idea I did. Anyway he got some paper and pen and I was able to write I was in terrible pain.
seeing and hearing familiar voices is soothing esp when you are in the hospital and you dont know why and there are new doctors in your room all day. Its scary
I also told my husband not to have the news on cause I was incorporating it into my reality and I thought I had radiation poison
after i got out of the hospital I pretty much slept for two weeks. Then was really not myself for two months but I would get showered dressed even if I was only going to the mailbox. Depending on what side her AVM bleed is on one side might be better for her to see and hear you.
Please let us know how she is doing. If you can play some music of her youth that you know she likes would also be soothing.
Angela

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Permalink Reply by Hopeful on February 15, 2012 at 10:30am

Angela, I'm so happy that you are here with us today after all you went through. My grandmother has a prayer box right by her ear where prayers are constantly being played. I hope she progresses soon. It is currently a waiting game and I hope her age does not work against her. As for your insight, I will keep it in mind for this weekend. Thank you! I will keep you posted on her condition.

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Permalink Reply by Angela on February 15, 2012 at 1:56pm

Hello Hopeful
That is wonderful that you have the prayer box for that she can hear. Also for me my husband said I would hold his hand even though I was not conscious. Touch is important.She is in there and just talking to her and letting her know you are there for her . When I would be able to be awake for a bit still not talking my family said they could tell my head hurt cause I would be rubbing it so they would get me ice packs for my head. As others have said here doctors and nurses cant tell us when we are going to come out of it or how our recovery will be. They just dont know enough and what we have is rare. Did your grandma have some head injury before this bleed? Did she travel? 60's is still young and you tell her to fight. Have everyone you know pray for your grandma. I tell you so many people were praying for me and lighting candles I was shocked there were no fires! I will pray for your grandma and your family. Keep strong
Angela

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ModeratorPermalink Reply by Louisa on February 15, 2012 at 7:55am

Hi Hopeful, I had a massive brain bleed as well. Every case is different when it comes to having a brain bleed. Stay strong. You will be in my thoughts and prayers.

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Permalink Reply by Hopeful on February 15, 2012 at 10:33am

Louisa,

The doctors and nurses also keep telling us that no one knows how she will do and that every case is different. We will just have to be patient and keep our hopes up. Thank you for your thoughts and prayers!

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ModeratorPermalink Reply by Trish on February 15, 2012 at 12:44pm

My experience was similar to Angela's. I was in a coma for 3 weeks after my bleed. I don't remember much of anything during that time. My husband brought my iPod and played my music. I was not concious but I tapped my foot so I guess I heard! The doctors attempted to remove the breathing tube 4 times before I was finally able to breath on my own. No trach tube. It reallly is impossible to say how it may be for your grandmother. So many factors can affect that. Just continue taking to her, play some music and hold her hand. She's in there somewhere! Best wishes and we're all pulling for her!

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Permalink Reply by Hopeful on February 15, 2012 at 11:47pm

Trish, wow 4 breathing attempts! You were still able to breathe by yourself in the end so that is very hopeful to hear. I will definitely keep holding her hand and talking to her. She takes care of everything in my family and holds us together. She's an angel. Thank you so much for your concern.

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Permalink Reply by Adrian on February 16, 2012 at 12:15am

sending my prayers.........God bless

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ModeratorPermalink Reply by Barbara H. on February 16, 2012 at 4:37pm

Hi Hopeful. We have a Success Stories sub-group on this site. Perhaps you would like to see some of our stories...
http://www.avmsurvivors.org/group/s
We also have a prayer sub-group too...
http://www.avmsurvivors.org/group/p
Please know that your Grnadmother has been added to my prayer list!

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