I just happened upon this blog post. It gives so little detail and no lilnks! It's very short but what I gather it's meaning to be is that the government doesn't think AVM's are worth the risk to research and that intervention is worse than letting the AVM run through it's natural course. Like saying hoping it doesn't bust is better than preventing one from busting. I was just wondering what everyone's opinion is on this.
I was excited about Obama's proposed brain mapping plan...is that even happening?
Kristi...Here is more information on why the government pulled away from the Study: http://journals.lww.com/neurotodayonline/Fulltext/2013/06200/Why_the_ARUBA_Trial_on_AVMs_Was_Stopped.1.aspx
I understand why they ended the study, I was just wondering how people (avmers) felt about it. Mine ruptured so naturally I would prefer further studies to find ways to prevent chances of future bleeds or lessen the chances of them occurring. I hope this doesn't close the door on any future studies :/
Kristi, I believe the study is going to be continued even without the Government's assistance. The best person to talk to about it is dancermom.
I agree that the Goverment should be helping us.
this is the same mentality that stopped space exploration after the Challenger disaster. Progress entails risk.
That's how I feel about it! How do you discover anything without taking a risk? Must every AVMer wait for a bleed for action to be taken? We need preventative measures to avoid future bleeds. My own experience was horrible and I've read worse stories on this site...we should avoid creating more of these stories/life tales. Discovering faulty techniques could help lead us to new and hopefully better techniques. It is disappointing. I understand but it's still disappointing.
Here are some additional details about ARUBA based on the presentation at the European Stroke conference: http://www.medscape.com/viewarticle/806297
Basically, 11 people had adverse events such as stroke in the conservative management group, and 33 in the interventional group in 3 years. These numbers are tiny -- should we really draw conclusions about avm treatment based on 33 incidents?? Establishing a registry and tracking results for all AVMers over the next decade is a better answer, in my view.