Hi everyone! first of all I am so glad I found this site because I am clueless about this thing. 6 months ago i was diagnosed with a right lung AVM,was told it was small but had to have another CT scan 6 months later,I went Tuesday for that one.I am waiting on the doctor to call with the results.I am not sure what I should do,I have read that brain and lung AVMs are the most dangerous and that small ones are more likely to bleed causing many things to happen if a bleed occurs in the lung.My doctor is not real familiar with these things and at the time she was researching I was doing the same online. Should I ask to be sent to somone who knows more about this thing? and what should I do about it have it removed the balloon thing I read they could do? I am so confused about this. So far I haven’t had any more detected even though I have bad migraines they couldn’t find one on the brain I am grateful for that! But still have the lung one and I am not sure what to do. will I have to have a CT scan on my lung every 6 months now for the rest of my life? From what I have read these things are ticking time bombs so should I insist something be done about it? There is not a lot of information on Lung avms that I could find and most were associated with HHT. when located in brain or lung. So far all my doctor said is you have to have 2 avms for them to consider that HHt is a factor??? So please any information or questions I should ask or things I should do would be of great appreciation. Right Lung AVM!!!
Thank you so much! I found out early today that I have multiple AVMs in the lung now and may be the hereditary disorder. going to see the doctor at 9am saturday.