We are AVM survivors, here for your support.
nyc meeting
Replies to This Discussion
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Permalink Reply by Heidi Woodsum-Santiago on -
I would be so grateful to meet other AVM survivors and hope something can definatly be planned. I am in Jersey and me and my family could take the train over. I would love it and hope it happens soon.
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Permalink Reply by Joseph Rizzo on -
yes so do I. I am working on getting something planned, maybe at a state park either in late fall or early spring. It will be nice to meet other avm survivors
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Permalink Reply by JH on
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I'm in Jersey and would love to come, but--and this is probably a problem for more people here--my husband and I are physically disabled and don't drive. We have to rely on public transport. If we meet somewhere in NYC, none of us will be excluded!
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Permalink Reply by David on -
I'm in Jersey also. JH if there is any issues with transportation, We'd be happy to carpool. Please keep all of us updated on the when and where.
Thanks,
Dave
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Permalink Reply by laurie Bauer on -
We are originally from NY and now live in PA. This would be a great opportunity for us. Please let me know if you need any help organizing
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Permalink Reply by Joseph Rizzo on
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HI to all sorry Work has been keeping me very busy and would appricate any help I can get So if anyone would like to help plan this event Laurie if you want to look into something in PA that would be fine or IF someone has an idea in NYC I am open to anything but I know my husband would love to get a chance to meet other survivors
laurie Bauer said:Just a thought, we live in Lancaster county PA. Very scenic and lots to do. It would likely much less expensive. There are a lot of hotels that could accommodate groups inexpensively. Just a thought, and there is a lot going on in the fall. Either way we will be sure to attend wherever it is. Looking forward to meeting such a great group of people!
Joseph Rizzo said:Yes I thing the fall will be a better time maybe we can find a place that all can join the group any surgestions let me know
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My story
Posted by chels925 on June 3, 2012 at 10:37am 0 Comments 0 Likes
Hello everyone. While I do not have a AVM, mine is only a VM. It is in my right cheek. I have been undergoing treatment for it since 2006. My first treatment was in September 2006. I had some complications (I got an infection and went septic). I…
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I moved on ... but I cant escape
Posted by Dansky on June 3, 2012 at 7:15am 0 Comments 0 Likes
The first rupture of my AVM brought me to total shutdown you could say. from normalcy to all of a sudden a twist of life.
I move on ... but I cant escape...
I was at work (luckily I was in office, crowded, people are present, the…
Continue Away for 5 weeks
Posted by ramona777 on June 2, 2012 at 3:51am 2 Comments 0 Likes
Hi to all my newfound friends . may not be online much in the next 5 wks but wanted to say to each and every one of you, many thanks for your welcome, friendship and support. be back soon. If anyone can advise me how to join AVM australia? Thank…
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the appioment went.......
Posted by Celina on May 31, 2012 at 8:59pm 2 Comments 0 Likes
it went good he wants to do a big test on me he has to open the top of my leg then put a tiny cam up my leg into my head i will be put to sleep for it he wants to look at it.
Starting to understand everything...
Posted by Hannahpoppe on May 30, 2012 at 12:45am 3 Comments 0 Likes
Hi everyone!
I'm a new member here...
I got diagnosed with AVM this fall. After having really bad headaches for a long time, I decided to visit the doctor. She made the descision to send me on an x-ray and then they saw a 2cm AVM om…
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Of Seizures
Posted by Jaime G. on May 29, 2012 at 7:32am 1 Comment 0 Likes
I'm being treated for Temporal seizures; simple and complex, aware and absence. The 1st one(went undiagnosed)happened almost 5mos post embolization/craniotomy. In Novemember simple happened 1 or so bi-weekly. This Jan I went inpt for longterm…
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Facebook Feature Supports Organ Donation
Posted by Armando A. on May 28, 2012 at 8:02pm 0 Comments 0 Likes
We never realize the value of organ donation, until we're on the receiving end.…
NUMBNESS
Posted by josh54 on May 28, 2012 at 12:20pm 2 Comments 0 Likes
My AVM was near my right lateral ventricle. It ruptured (very painful) and I had a crainiatomy. After the surgery there were difficulties and I was in a ten day coma. When I awoke the AVM was removed successfully but as a result I have numbness,…
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Coffee in Rockhampton
October 11, 2011 at 6pm to October 10, 2012 at 7pm – Some where with good Coffee
2 Comments 1 Like
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