First off, I wanted to thank all of you for the warm welcome!
I found out a week ago today that my constant headaches/nausea/vision problems were because of an AVM on my brain. I haven’t gotten in to see a neurologist or neurosurgeon yet and I am in the process of gathering questions together for when I do get in to see a specialist so if anyone has suggestions they would be greatly appreciated; until last week I had never even heard of an AVM so I’m a bit out of the loop and still kind of in a dumbfounded state of shock…
I was also wondering if anyone else with a brain AVM has noticed increased sense of smell? (both good and bad…) that has been something which I’ve noticed coincided with my symptoms.
Hi Agang. There is a sub-group here… http://www.avmsurvivors.org/group/questionsformydoctor
Patt G. Is in that group. She has composed a list of questions which are handy. Starting with…How many AVMs have your treated?!
Agang, Like you, when I was diagnosed, I had never even know there was such a thing as an AVM. The first neurologist I saw did not understand about AVM’s and told me to just do nothing and forget about having an AVM. Neuro docts treat many different areas, so I decided to find a doctor that totally understood what an AVM was. I went online and typed in Hospitals that treat AVM’s and thankfully found that Mass General Hospital (1 hour from where I live) specialised in treated AVM’s. So that’s where I went immediately. There are several very good hospitals and the USA Try looking at the 3 best neuro’s in 2011…http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery
Welcome to the group Agang! I was like you 2 months ago and I have to say I have got tremondous support from this forum…so while you don’t really want to be here but you are at the right place
For me the most important thing I want to ask was what happens if I leave it untreated and how important it is to treat it clinically given that I have very less symptoms? And as others says, it’s the experience of the docs which can make a real difference. So don’t be shy to ask about how many cases have they dealt like this and what’s their experience says. Take as many opinions as you think is necessary. Having faith in the doctors really lifts off half of worries.