What should we know about liver avms. I don’t see a group for that
John's dad, we have had only a few members reporting liver avms, not enough to form a group. Try typing "liver avm" in the search box at the upper right corner to find other members who have them. I can also look out for some articles for you.
Jons dad you leave liver AVMS alone in HHT and consult an HHT doctor. Didn't your son have genetic testing? My husband did not have nosebleeds until his early 40s. His mutation leans more toward liver AVMS but you can have them anywhere. The HHT center in Augusta GA would be closer for you. I thought that was were you were going. You can go to hht.org and get all the information you need on liver avms.
Thank you. We just returne from Johns Hopkins. My son had a spinal embolizations done. He was positive for PAVM on the echo bubble test as my wife was also, but none are over 2.5 mm. The last day there we were told our daughter had a liver avm. The hht doctor we were seeing in Johns Hopkins was out of town when we left so we were told to wait till this coming week and she will compile information for us. So when she gets back she is going to talk to a couple other doctors about the plan. We were just trying to get personal information on them to maybe have a better understanding of them when the doctor calls. This way we can formulate questions for the phone call
I understand :) The more information you have the better. John Hopkins is excellent. I don't think you could be in better hands. I pray your son starts feeling better. Was genetic testing ever done?