We are AVM survivors, here for your support.
Calling all Avmers in the UK !!
Living in the UK, i am consistently coming up against a lack of information, and co-ordination on information about AVM research,There are certain sites but i feel they are out dated, especially with regards to peripheral AVMS ( My daughter has a large diffuse cranofacial AVM ), If indeed there is any research being carried out in the UK !, especially if i compare this to the USA, who even have hospitals dedicated to the management and cure of AVMS .
The AVM Survivors network has nearly 4000 members, with this support surely we all should be pressing for Novel treatments to be found solely for us AVMers or families with AVMers.
Straying from the point slightly, I wish to hear from anyone in the UK with an AVM, As i am keen to start a Research Charity solely for AVMs, Lets try to push the issue, and raise funds, Sadly Research is being hampered by lack of funding with the more "Well known charities" taking centre stage because we are a minority .
Please contact me as surely im not the only parent in the UK who has a child with an AVM !, Lets press for change and build awareness .
George
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Counting Down The Days...
Posted by Sam on May 27, 2012 at 3:30pm 0 Comments 0 Likes
I'm counting down the days!!! At the end of June 2012 i have to go to the hospital for another Angio.
Hope to hear good news, that the Embolization and 2 Gamma Knife treatments where succesfull and that after 7 years of fighting the AVM is…
What up with my ear???
Posted by kristi on May 26, 2012 at 3:17pm 3 Comments 0 Likes
I had a bruit when I had the AVM. It was there all my life. I guess everyone hears it at some point but as an "AVMer" mine was ALWAYS present. We became friends:)
My bruit was my connection to my heart, so I always thought (when I never…
MRI or angio?
Posted by stephanie on May 26, 2012 at 1:24pm 4 Comments 0 Likes
Click here to visit my latest blog post. If anyone could shed some light on the conclusiveness of MRI and angio, it would be great! The surgeon…
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Stage one complete
Posted by existentialmom on May 25, 2012 at 4:48pm 2 Comments 0 Likes
Merlin came through the first gamma knife well, and we are scheduling stage 2 in August. Her treatment time was 152 minutes! No side effects yet.
We are relieved, but holding our breath against the next 3 months, 6 months, 1 year, 3 years,…
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Thank you
Posted by Cat D on May 25, 2012 at 3:14pm 2 Comments 2 Likes
I only got accepted to this site yesterday and already I feel at home. I hope that this will be good for me and my mom who also was accepted yesterday. We both have been through a lot in the…
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May 2012 AVMSurvivors Community Newsletter
Posted by Ben Munoz on May 25, 2012 at 9:14am 0 Comments 2 Likes
Dear Friends and Family of AVMSurvivors,
We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient…
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10 days post surgery for my brother
Posted by DsSis on May 25, 2012 at 12:37am 5 Comments 2 Likes
David's surgery was May 14th and today, May 24th, we had a series of wonderful things happen.
1) I finally got to see my brother walk (with the assistance of his wonderful physio) - he made two rounds of the hospital ward...I was the last…
"Executive Function Disorder"
Posted by Hiro on May 23, 2012 at 8:50pm 10 Comments 0 Likes
I had the neurologist appointment on Monday, and he diagnosed me with "Executive Dysfunction Syndrome" that he thinks stemmed from some sort of damage to my left frontal lobe during/after my surgery (that was where my 3 AVMs were), contributing…
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