The ARUBA study has found conservative management is best for unruptured asymptomatic AVMs. Please take a look at this report on the ARUBA study and discuss it with your Doctor. I’m 28 and I have an asymptomatic AVM that was diagnosed when I was 16. It used to give me daily headaches but I’m asymptomatic now. Given the features of the AVM I’ve been told I’m a bad candidate for surgery, Gamma and Cyber Knife and embolization. I’ve opted for conservative management until I show symptoms. At that point I will re-evaluate. The article is available at http://www.medscape.com/viewarticle/806297
Chika, I see a lot of possible problems with a study that "randomized" whether intervention (surgery/gamma/embolization) was given to patients, that involved hundreds of different treatment centers, which were surely of varying quality, and whose results cover only a three-year period. From my point of view, ARUBA is about as helpful as a Magic 8 Ball for determining an individual's best course of treatment for an avm. This study has been much hyped, but is not the game-changer that the media claims it to be.
I see where you are coming from, most definitely. I did want to read the article though, and it won't let me unless I join, and it is giving me a devil of a time joining. I didn't think I had to be in the medical profession to join that site? Boo :(
Here is some information about the trial: http://www.medscape.com/viewarticle/806297
As you can see, the intervention group was 114 patients. 33 of them had a significant adverse event. These 33 were the basis for stopping the study.
We have so many more people here. To my mind, reading the stories on this website provides far more useful information than reading ARUBA.
I agree with you about this site. Every patient is different and I deal with doctors on a regular basis that do not think I am text book case...and that is because I am not! It frustrates them...which is fine, but it often gets taken out on the patient. I love how this site has patients who have also been misunderstood and misdiagnosed and I don't feel so alone. I would rather no one have to go through that to begin with, or better yet, I wish support sites didn't HAVE to exist in the first place...for anything. But I am very glad that we have this opportunity. When I first started going through it there weren't any. I had to learn to steel myself against ignorance in the medical community a long time ago, but it is nice to see that I have a place to go to that will remind me to stand strong and resolute, when dealing with people that just don't know.
And 33 out of 114? No wonder they discontinued.....
I don't know if I can quantify what we felt or not, when we were searching for treatment of Chari's AVM. Some local doctors discouraged us from seeking other treatment, or suggested that if we went to more than one DR, we might end up with two divergent opinions (which we did).
We went to Stanford and met with the team there. The feeling (again, hard to quantify) was they were genuinely interested in treating Chari to get rid of the AVM. It took consultations on what to do, and ended up using embolization, radiation, and micro-surgery. We never felt like they didn't want to help, since it didn't fit their ideal profile.
We had a lot of respect for their staff and doctors. Not suggesting that other places don't have good staffs either, but a place like Stanford sees the worst of the worst from all over the world. Hope this helps.
I think the largest issue with the ARUBA study is that it was very difficult to find participants and thus they were not able to get enough people to really make a quantitative study. I actually spoke about the study with my doctor this past summer and we both agreed that a large
problem was that it was really difficult to find people who wanted to let someone else decide how to treat their AVM.
At this point I have opted for conservative management as well due to the fact that I have no deficits or symptoms but I am in constant contact with my neurosurgeons in the event that something should happen.