AVM on,into,or near the HEART

I was just wandering if anyone has or knows someone who has an AVM on,into,or near the heart. I have a good sized AVM on my heart and a lesion into the heart. If so,what kind of symptoms or complications do you or the person you know have. How do you handle or cope with things. My doctor said this is extremely rare and they have nothing to compare it to. I have all the risk factors of an inoperable AVM plus the risk of heart problems due to the damage the AVM is causing. Some of the complications and symptoms I have include regurgitation in the heart, tachycardia, arrhythmia, HIGH risk for high output cardiac failure, poor circulation, and fatigue. In a way I hope I am alone in this, as far as the AVM location is concerned, then no one else has to feel this way!