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Permalink Reply by Ben Munoz on March 16, 2010 at 4:51pm

I'll start off. I had an AVM bleed in 2006, then gamma knife in 2007, then two years of recovery. During that time I really needed someone to talk to, so I created AVMSurvivors.org. Others heard about it and now it's the #1 support community in the world for AVMers.

Abrazos,
Ben

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Permalink Reply by Jordan Johnson on March 16, 2010 at 4:58pm

I had an AVM rupture in 1996 on the right side of my brain, I now have partial paralysis on the left side, more specifically my arm and leg, as well as a bad short term memory, I had a Grand Mal Seizure w/ the AVM, then one in 2004 that is associated w/ it by way of temporary damage, and abother seizure in 2006.

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Permalink Reply by Karen Arnstein on March 17, 2010 at 1:45am

Hi Everyone!

My name is Karen and I was recently diagnosed with my AVM on March 8th. It's on the Right Parietal lobe and thankfully in the cortex. It's about 2.5 cm in diameter and almost 1 cm deep. I'm still in shock and have been trying to deal with the fact that it has to be removed, even though I feel completely healthy. I am going in for the pre-surgical embolization on April 5th and surgery for removal on April 8th.

I've never done some formal introduction on these types of websites, so here goes. I'm 42 years old and am married with a 2 yr old son. He is absolutely the light in my life and worth every day of bed rest I endured during the pregnancy. ;) My husband has been incredibly supportive - not just with finding out about the AVM - but also with the fact that I was laid off about 15 months ago. Honestly, it was the BEST thing that ever happened to me (professionally) and has been a real blessing in disguise. I practice hot yoga at least twice a week and have finally started on my vegetable garden that I've been talking about for 10 yrs. It's been so good for me to take out my anxiety and sadness on shoveling dirt.

I wish I didn't feel so rushed, but this AVM thing feels like it's taken over my life these days. My husband, Aaron, has to travel for work for several months at a time. He's scheduled to leave after mid-April and I'm nervous. I will not and cannot do this without him. I worry the most for my son and keeping his world safe and secure. I'm very very lucky to have most of my family behind me, checking in on me and supporting me. I'm trying to keep my mind on the future, like skiing next winter, going back to school to finish up pre-requisites for a PA program. My life feels in some ways like it just began and this is a speed bump on my journey.

Thank you to everyone on this site who has extended their kindness and friendship. I'm really glad I found you all.

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Permalink Reply by Cindy Nelson on March 17, 2010 at 11:56pm

Karen, be strong. You are in my prayers!

Karen Arnstein said:

Hi Everyone!

My name is Karen and I was recently diagnosed with my AVM on March 8th. It's on the Right Parietal lobe and thankfully in the cortex. It's about 2.5 cm in diameter and almost 1 cm deep. I'm still in shock and have been trying to deal with the fact that it has to be removed, even though I feel completely healthy. I am going in for the pre-surgical embolization on April 5th and surgery for removal on April 8th.

I've never done some formal introduction on these types of websites, so here goes. I'm 42 years old and am married with a 2 yr old son. He is absolutely the light in my life and worth every day of bed rest I endured during the pregnancy. ;) My husband has been incredibly supportive - not just with finding out about the AVM - but also with the fact that I was laid off about 15 months ago. Honestly, it was the BEST thing that ever happened to me (professionally) and has been a real blessing in disguise. I practice hot yoga at least twice a week and have finally started on my vegetable garden that I've been talking about for 10 yrs. It's been so good for me to take out my anxiety and sadness on shoveling dirt.

I wish I didn't feel so rushed, but this AVM thing feels like it's taken over my life these days. My husband, Aaron, has to travel for work for several months at a time. He's scheduled to leave after mid-April and I'm nervous. I will not and cannot do this without him. I worry the most for my son and keeping his world safe and secure. I'm very very lucky to have most of my family behind me, checking in on me and supporting me. I'm trying to keep my mind on the future, like skiing next winter, going back to school to finish up pre-requisites for a PA program. My life feels in some ways like it just began and this is a speed bump on my journey.

Thank you to everyone on this site who has extended their kindness and friendship. I'm really glad I found you all.

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Permalink Reply by Cindy Nelson on March 17, 2010 at 11:57pm

Ben,

Thank you for starting this organization. There is a great resource for support!

Ben Munoz said:

I'll start off. I had an AVM bleed in 2006, then gamma knife in 2007, then two years of recovery. During that time I really needed someone to talk to, so I created AVMSurvivors.org. Others heard about it and now it's the #1 support community in the world for AVMers.

Abrazos,
Ben

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Permalink Reply by cathy cortes on March 22, 2010 at 3:24am

HI KAREN, MY NAME IS CATHY N JUST WANT YOU 2 KNOW I WILL SENDING PRAYERS YOUR WAY...IF ITS ANY HELP TO YOU THEY LIKE TO TAKE OUT THES AVMS B4 THEY RUPTURE CUZ ONCE THEY RUPTURE ITS MUCH MUCH WORSE, MY GRANDSONS RUPTURED N THANK GOD HE SURVIVED...YOU WILL BE FINE N THE RECOVERY WILL BE MUCH SHORTER THAN A RUPTURE.GOOD LUCK N KEEP US POSTED PLEZ.......
Karen Arnstein said:

Hi Everyone!

My name is Karen and I was recently diagnosed with my AVM on March 8th. It's on the Right Parietal lobe and thankfully in the cortex. It's about 2.5 cm in diameter and almost 1 cm deep. I'm still in shock and have been trying to deal with the fact that it has to be removed, even though I feel completely healthy. I am going in for the pre-surgical embolization on April 5th and surgery for removal on April 8th.

I've never done some formal introduction on these types of websites, so here goes. I'm 42 years old and am married with a 2 yr old son. He is absolutely the light in my life and worth every day of bed rest I endured during the pregnancy. ;) My husband has been incredibly supportive - not just with finding out about the AVM - but also with the fact that I was laid off about 15 months ago. Honestly, it was the BEST thing that ever happened to me (professionally) and has been a real blessing in disguise. I practice hot yoga at least twice a week and have finally started on my vegetable garden that I've been talking about for 10 yrs. It's been so good for me to take out my anxiety and sadness on shoveling dirt.

I wish I didn't feel so rushed, but this AVM thing feels like it's taken over my life these days. My husband, Aaron, has to travel for work for several months at a time. He's scheduled to leave after mid-April and I'm nervous. I will not and cannot do this without him. I worry the most for my son and keeping his world safe and secure. I'm very very lucky to have most of my family behind me, checking in on me and supporting me. I'm trying to keep my mind on the future, like skiing next winter, going back to school to finish up pre-requisites for a PA program. My life feels in some ways like it just began and this is a speed bump on my journey.

Thank you to everyone on this site who has extended their kindness and friendship. I'm really glad I found you all.

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Permalink Reply by Vera on March 27, 2010 at 1:35pm

Hi there,

My name is Vera and I was diagnosed with a 4 cm AVM in the fronto-parietal region on march 16th. First off, I'm so happy that a group like this exists, because I feel very sad right now. I have had horrible migraines and mild left sided paralysis and numbness my whole life, but my family doctor didn't worry about it. As a medical student, I got myself in to see a neurologist and this is what they found. I won't know until April 9th what the doctors can do for me, and I'm very scared. I have the ACA, MCA and ICA feeding into this thing and some gliosis surrounding it. I don't know if it had been bleeding all along.

Thank you for taking the time to listen,

Take care.

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Permalink Reply by Ben Munoz on March 27, 2010 at 2:28pm

Vera, thanks for sharing. I know you are very scared. At least you finally have a correct diagnosis. I don't know who the most experienced AVM surgeons in Canada are, but feel free to contact other Canadians, perhaps they know.

Ben

Vera Helen Krejcik said:

Hi there,

My name is Vera and I was diagnosed with a 4 cm AVM in the fronto-parietal region on march 16th. First off, I'm so happy that a group like this exists, because I feel very sad right now. I have had horrible migraines and mild left sided paralysis and numbness my whole life, but my family doctor didn't worry about it. As a medical student, I got myself in to see a neurologist and this is what they found. I won't know until April 9th what the doctors can do for me, and I'm very scared. I have the ACA, MCA and ICA feeding into this thing and some gliosis surrounding it. I don't know if it had been bleeding all along.

Thank you for taking the time to listen,

Take care.

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Permalink Reply by Joana Arellano Mansoor on August 11, 2010 at 10:48pm

And I am glad you did, most people I speak to about this has no idea what I am talking about and it's nice to see and be able to relate to others that know exactly what I am talking about! Thanks buddy! :0)

Ben Munoz said:

I'll start off. I had an AVM bleed in 2006, then gamma knife in 2007, then two years of recovery. During that time I really needed someone to talk to, so I created AVMSurvivors.org. Others heard about it and now it's the #1 support community in the world for AVMers.

Abrazos,
Ben

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Permalink Reply by Athur Art on September 10, 2010 at 4:07am

I'm Athur, a totally newbie to this community. Nice to see you all and great to be a part of the community. Hope to get help from you, thank!

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