Replies to This Discussion

Permalink Reply by Susan Troop (Lindsey's Mom) on December 28, 2009 at 9:07am

Hi Ruth! You will find lots of great encouraging stories on this web site. You have come to the right place.
My 10 year old daughter had a bleed from her AVM this past July. It resolved itself, so she didn't need to have anything done at that time, but we did have a three day hospital stay, to observe her to make sure that it wasn't getting worse.
Since then, we have had CT scans, MRA, and an angiogram, and are finally scheduled for embolization and craniotomy to remove it, this January. I know how hard it is to watch a child go through all of this. It is tough, but at least kids are pretty good at bouncing back from these things. That is what is great about the young brain, it is very resilient.
Hang in there, we are saying prayers for you and your granddaughter.

Susan

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Permalink Reply by Ruth Pepperman on December 28, 2009 at 1:29pm

Hi Susan and thanks for replying. It is really hard as, until this happened, Tal was one of the noisiest and most energetic of my grandchildren (and believe me - they are all a bit that way - guess the apple didn't fall too far from the tree!). Now, to see her lying there, unconscious, hooked up to machinery... Well, I don't have to tell you! We're praying that no harm was done to the brain by the initial bleed. They're talking about waking her up tomorrow or the next day. I'll keep you posted. I'll print out your reply and take it to the hopsital for my daughter to read tomorrow (she'll read it to my son-in-law who is virtually blind).

Susan Troop (Lindsey's Mom) said:

Hi Ruth! You will find lots of great encouraging stories on this web site. You have come to the right place.
My 10 year old daughter had a bleed from her AVM this past July. It resolved itself, so she didn't need to have anything done at that time, but we did have a three day hospital stay, to observe her to make sure that it wasn't getting worse.
Since then, we have had CT scans, MRA, and an angiogram, and are finally scheduled for embolization and craniotomy to remove it, this January. I know how hard it is to watch a child go through all of this. It is tough, but at least kids are pretty good at bouncing back from these things. That is what is great about the young brain, it is very resilient.
Hang in there, we are saying prayers for you and your granddaughter.

Susan

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Permalink Reply by Liesa on December 29, 2009 at 6:49pm

I just joined the site today. My 11 year old had an AVM bleed and then removed this october and is recovering. Her doctor says that her healing has been nothing short of 'miraculous'. I can only add that we immediately requested prayer from family, friends, priests and sisters of three orders! No doubt in our minds that God has answered the prayers. So, as her bleed was discovered they had her in ICU for several days. IT was horrible to just sit there and wait and watch. The first procedure removed the clot. Once that was removed they wanted to let her brain rest and for the swelling to go down. About a week later, they removed the AVM which was in the left frontal lobe. IT was the size of a large walnut towards the exterior part of the brain. AS they went in, they found it did lead deeper into the brain than they had previously seen on the CT. They thought they had it all, did an angio, found another spot and sent her right back in for another surgery to remove the remainder. It was a 12 hour day of surgeries. My daughter celebrated a wonderful Christmas with us, at home, just over two months after the surgery. I will pray for your grand daughter, that she have the same miraculous outcome as well.

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Permalink Reply by Ruth Pepperman on December 30, 2009 at 2:51am

Thanks for your reply Liesa. It's at times like this when we really understand how helpless we are. Our family has been through a lot of stress over the last year and we have seen a lot of miracles. One of the wonders of the internet is that we can, within seconds, request prayers from people all over the world. No doubt in my mind that this is what has got us so far and with G-d's help will get us through the future. Tal is being kept sedated until at least tomorrow (Thursday) when the doctors will review her situation. Please carry on with the prayers.

Liesa Dugan said:

I just joined the site today. My 11 year old had an AVM bleed and then removed this october and is recovering. Her doctor says that her healing has been nothing short of 'miraculous'. I can only add that we immediately requested prayer from family, friends, priests and sisters of three orders! No doubt in our minds that God has answered the prayers. So, as her bleed was discovered they had her in ICU for several days. IT was horrible to just sit there and wait and watch. The first procedure removed the clot. Once that was removed they wanted to let her brain rest and for the swelling to go down. About a week later, they removed the AVM which was in the left frontal lobe. IT was the size of a large walnut towards the exterior part of the brain. AS they went in, they found it did lead deeper into the brain than they had previously seen on the CT. They thought they had it all, did an angio, found another spot and sent her right back in for another surgery to remove the remainder. It was a 12 hour day of surgeries. My daughter celebrated a wonderful Christmas with us, at home, just over two months after the surgery. I will pray for your grand daughter, that she have the same miraculous outcome as well.

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Permalink Reply by Ruth Pepperman on December 31, 2009 at 3:45pm

Thanks for contacting me. We're still in a big state of uncertainty at the moment as Tal is being kept sedated. They're not going to do this until her pressure remains low. When they wake her we'll at least have some idea of what, if any, damage has been done due to the bleed. Then comes the decision as to the best way to deal with the AVM. My daughter Sarah (i.e., Tal's mom) has been in the hospital since last Friday night, only going home (a distance away) tonight until tomorrow morning to see the other children. My son-in-law is basically blind so, although he's fantastic, he can really only take over at the hospital if someone is with him. We're quite a large family so we do what we can but understandably, Tal's parents really want to be there all the time. Now that we've realised that this is probably going to be a long haul we're going to get a proper rota going for when Tal is wakened up.

Irene C said:

Hi. i had an AVM bleed and craniotomy when I was 8 in 1959. So, I know what it's like, I remember, and I also know what some of the results can be. Write me.
beans

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Permalink Reply by Liesa on January 4, 2010 at 10:53am

My daughter who had three crainiotomies in October is back to school today!!!! We are still having some glitches with meds I think: speech hiccups and some occassional cognative difficulty BUT PRAISE GOD for his mercy! She is getting back to 'normal'! There is tremedous hope through prayer and the incredible gift of excellent medical staff and the love and support of our communities....when I took her to school this morning she was smiling and very happy to be 'back'. Now THAT's the way to start a new year....
I will continue to pray for all of you. Watch for those little blessings....

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Permalink Reply by Ruth Pepperman on January 4, 2010 at 3:56pm

Hi Liesa. They woke my granddaughter up yesterday after over a week of being sedated. This is hard! She can hear and see - although we're not sure exactly how much - and also move arms and legs. Her speech gives me a lot of cause for concern. She seems to have very little control over her lips and tongue and seems to be constantly trying to talk. Most of what she says is inaudible and indecipherable. Perhaps this is something that has to be gone through after being on a respirator for all this time or perhaps it's a symptom of some brain damage. All we can do is pray and wait!

Ruth

Liesa said:

My daughter who had three crainiotomies in October is back to school today!!!! We are still having some glitches with meds I think: speech hiccups and some occassional cognative difficulty BUT PRAISE GOD for his mercy! She is getting back to 'normal'! There is tremedous hope through prayer and the incredible gift of excellent medical staff and the love and support of our communities....when I took her to school this morning she was smiling and very happy to be 'back'. Now THAT's the way to start a new year....
I will continue to pray for all of you. Watch for those little blessings....

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Permalink Reply by Christine on January 4, 2010 at 4:10pm

Ruth
My 6 year old daughter (then 5) had speech problems and partial facial paralysis after an embolization. The resilience of these kids is amazing. the paralysis is gone and she only has minor issues with her speech but it is getting better. The neurologist at the hospital who had treated my AVM 20 years before made me a promise that her speech would resolve itself. It was the only promise we ever got in the hospital.
Keep your chin up, it will get better. We will be praying for you :)

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Permalink Reply by Ruth Pepperman on January 4, 2010 at 4:28pm

Thanks Christine. My granddaughter, Tal, hasn't even got to the stage of possible embolization yet! She's still in the waiting stage to see what, if any, brain damage has happened due to the bleed. Then the big decision will be made as to how to deal with the AVM. We're just praying that this problem with her speech is temporary. However, your mail gives me hope so thanks again.

Christine said:

Ruth
My 6 year old daughter (then 5) had speech problems and partial facial paralysis after an embolization. The resilience of these kids is amazing. the paralysis is gone and she only has minor issues with her speech but it is getting better. The neurologist at the hospital who had treated my AVM 20 years before made me a promise that her speech would resolve itself. It was the only promise we ever got in the hospital.
Keep your chin up, it will get better. We will be praying for you :)

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Permalink Reply by Liesa on January 4, 2010 at 4:42pm

Keep the faith. Mine had the same. It was verrrrry scarey but her verbals came back! Pray, pray, pray! And if you can, have a priest bless her! My daughter was continually getting blessings....it's all I asked for; and when I look at her now, I know they were answered. She has some temporary verbal difficulties here and there that I think are due to the meds. The neurologist said we can switch meds but this is far better than the Keppra side effects so we hate to risk symptoms that might be worse again. The waiting and watching their discomfort is the worst. In October, She was in the hospital for 3weeks. I felt like my life stopped.....now I look back and it was like child birth...I can almost forget it. Concentrate on her completely recovering...avoid looking at the worst case and concentrate only on the best case...God Bless.

Ruth Pepperman said:

Hi Liesa. They woke my granddaughter up yesterday after over a week of being sedated. This is hard! She can hear and see - although we're not sure exactly how much - and also move arms and legs. Her speech gives me a lot of cause for concern. She seems to have very little control over her lips and tongue and seems to be constantly trying to talk. Most of what she says is inaudible and indecipherable. Perhaps this is something that has to be gone through after being on a respirator for all this time or perhaps it's a symptom of some brain damage. All we can do is pray and wait!

Ruth

Liesa said:

My daughter who had three crainiotomies in October is back to school today!!!! We are still having some glitches with meds I think: speech hiccups and some occassional cognative difficulty BUT PRAISE GOD for his mercy! She is getting back to 'normal'! There is tremedous hope through prayer and the incredible gift of excellent medical staff and the love and support of our communities....when I took her to school this morning she was smiling and very happy to be 'back'. Now THAT's the way to start a new year....
I will continue to pray for all of you. Watch for those little blessings....

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Permalink Reply by Ruth Pepperman on January 4, 2010 at 4:51pm

Hi Liesa and yup - all we can do is pray, pray, pray. We are Jewish and so our equivalent of a priestly blessing is blessings from big Rabbis and we have got them and are continuing to get them. I'm so happy that your daughter's verbals came back. It's so frightening when you see this little girl who, just over a week ago was an extremely lively and happy child, suddenly in this helpless state - so helpless that she can't even tell us anything. We're all keeping up the prayers. Thanks for the encouragement.

Liesa said:

Keep the faith. Mine had the same. It was verrrrry scarey but her verbals came back! Pray, pray, pray! And if you can, have a priest bless her! My daughter was continually getting blessings....it's all I asked for; and when I look at her now, I know they were answered. She has some temporary verbal difficulties here and there that I think are due to the meds. The neurologist said we can switch meds but this is far better than the Keppra side effects so we hate to risk symptoms that might be worse again. The waiting and watching their discomfort is the worst. In October, She was in the hospital for 3weeks. I felt like my life stopped.....now I look back and it was like child birth...I can almost forget it. Concentrate on her completely recovering...avoid looking at the worst case and concentrate only on the best case...God Bless.

Ruth Pepperman said:

Hi Liesa. They woke my granddaughter up yesterday after over a week of being sedated. This is hard! She can hear and see - although we're not sure exactly how much - and also move arms and legs. Her speech gives me a lot of cause for concern. She seems to have very little control over her lips and tongue and seems to be constantly trying to talk. Most of what she says is inaudible and indecipherable. Perhaps this is something that has to be gone through after being on a respirator for all this time or perhaps it's a symptom of some brain damage. All we can do is pray and wait!

Ruth

Liesa said:

My daughter who had three crainiotomies in October is back to school today!!!! We are still having some glitches with meds I think: speech hiccups and some occassional cognative difficulty BUT PRAISE GOD for his mercy! She is getting back to 'normal'! There is tremedous hope through prayer and the incredible gift of excellent medical staff and the love and support of our communities....when I took her to school this morning she was smiling and very happy to be 'back'. Now THAT's the way to start a new year....
I will continue to pray for all of you. Watch for those little blessings....

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ModeratorPermalink Reply by Ben Munoz on January 5, 2010 at 9:22am

Ruth, are you part of the parents of AVM group yet: http://www.avmsurvivors.org/group/parentsofavm

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