Last week I had my first angiogram for my recently diagnosed pulmonary AVM. It was found to be large (bigger than a hen's egg) with multiple feeder arteries - however apparently confined to the pulmonary vascular system with no involvement from other lung-related vascular systems (cerebral etc). Also I don't have a brain AVM which is great news.
A multi-disciplinary discussion is required to decide what to do about it. Initial talks with the radiologist and cardiologist indicate that they are now leaning less towards coiling/embolisation and more towards lung surgery. I'll find out within a week or so what they plan to do.
Surgery is an alarming prospect for me. I'd like to hear from anyone who:
- has had a lung resection, lobectomy etc - what was your experience of the operation and post-op?
- has had a complex, multiple-feeder pulmonary AVM treated with coil embolisation.
Kate, we have such a small group of members with pavms. If you don't get answers here, there are a couple of options. You can copy your questions and click "Send message to group" above the member photos on the Extremity group. Or, you can head to HHT International on Facebook, where there should be more pavmers who can respond to you. Whatever you learn, please report here, as the information will benefit others with pavms. A hen's eggs is very large for coils, in my opinion. It seems like it would take hundreds to fill that space. And there could be some potential for migration, compaction,or infection. I can understand why the docs might be leaning toward surgery. I look forward to hearing what you learn from your medical team next week. All the best to you, Kate!
Hi there. I realize this topic was visited 8 years ago, but I am hoping to connect with anyone with similarities. Kate_R, your case sounds so similar. I had an incidental finding of a 5.6mm pulmonary AVM during an abdominal CT scan.
Specialists have recommended lung resection and I am scheduled for May 3rd.
Welcome! I hope some you can connect with some folks that can pass along some experiences they have had. I’m a brain guy…many would say that us not true in many regards!..so can’t be a ton of help. I can say that for me the earlier days were the scariest, I knew so little and was supported so much by people here. I imagine some folks from the Pulmonary/Heart/HHT group will join in but sometimes a few days. Take Care, and once again welcome! John