Was born with a facial tumor – right cheek, nose, lip. Growing up, they called it a hemangioma. More recently they started calling it a vascular malformation. I had eight minor surgeries, mostly laser treatments, over the past year with the assumption it was a vascular malformation. But with my December 22nd surgery, they sent some tissue to the lab, and it came back as an arteriovenous malformation. Which I’d never heard of before. But I read about it a lot online. Raises lots of concerns, to say the least, and clearly requires a different treatment approach. I’m fortunate that my appearance has been improved a lot over the past year, and this last surgery opened up my nasal breathing for the first time in my life. However, this makes me very hesitant to have any more surgeries. So I’m eager to learn more and hear about other people’s experiences.
Hello MikeW and welcome to the forum. Everyone here was once surprised to learn they had something they had little knowledge of: an AVM or VM. You are right to suggest you re-think the course of treatment for your AVM. As you probably know by now, the best course of action is to obliterate the AVM and in particular the AVM’s nidus. Common practice seems to indicate embolization of the AVM which involves injecting the mass with a chemical agent. Chemical agents range from alcohol or ethanol to phosphate detergent or glue. If the nidus isn’t destroyed, the AVM tends to grow back… and generally ‘worse’ than before surgical intervention. I have (or possibly “had”) an AVM on my left foot. I have had three angiogram procedures over the last 90 days that used glue and detergent to essentially kill the bulk of the AVM. I go back for a fourth procedure later this month to see if its dead/in remission. Many of us here have been treated by an interventional radiologist, which is a speciality that combines radiology with surgical techniques. I don’t know if you have an experienced Interventional Radiologist where you live. The IR here in Grand Junction, CO that is treating me is Chris Hampson. He said he has treated (successfully) facial AVM’s on people in the past. So far I’ve been very pleased with his knowledge, skill set, bedside manner. I suspect he’d be glad to help others as well.
Hang in there Mike- I believe there are many people among us who have had facial AVM’s successfully treated…
Hi Mike and welcome, I know that it can be loads to take in but here we have had many many members with facial AVM’s that were treated very well. I did a search for you and you can browse the results Here and feel free to use the search bar at the ttop right of the site to gather more info, Here this community has been gathering info and its almost like a library of information some of the best info available from the internet and almost all is positive which is great Take care
Take care