Has anyone had a successful facial AVM resection? My Doctors are leaning in that direction and it’s something I’m really scared to pursue.
We have a facial specific AVM group with 39 members, it would be worthwhile for you to have a look there. Also if you see the magnifying glass up in the top right corner of the screen, click it, and search facial avm resection and you will see some threads. My AVM was in my brain so quite different location, but can tell you fear is something we all experience! Fear and a range of emotions, and some really tough decisions. My philosophy is to be confident in your care team, and at peace with whatever root you choose. We often don’t know if our decisions are right or wrong until after, and sometimes well after. Being at peace is key! Hopefully some of our facial crew can pass along their experiences. Take Care, John.
1 Like
Thank you.
There are two people I can think of in the @Facial group who I think have had a resection of one kind or another. One is @LoulouYorkshire and the other is @Mel1315.
The biggest challenge in my mind is getting sufficient expertise to consider your case: a facial AVM appears to me to be rare among rare and the treatments associated with one seem different from a brain AVM, so you need at least a couple of alternate viewpoints from the best maxillofacial experts you can find, with a great background in treating other facial AVM people.
I’ll let the Facial team share their experience with you: I’m a brain AVMer.
1 Like
Dr. Suen did a facial resection on my son and saved his life 18 years ago. We still check in with him on a regular basis. He is a brilliant and caring physician. I recommend him whole heartedly! Dr. Suen is located at UAMS.
1 Like
Thank you very much.
1 Like
Bonnie - That must have been pretty scary for you as a parent. Do you know if he used schlerotherapy or embolic agents prior to surgery? How extensive was your sons Avm?
Hi Amy,
It was very frightening. The left side of his face was raging with AVM as well as his jaw. My son was seen at Children’s in DC for 2 years before going to Dr. Suen. They used alcohol, glue and coils to try and stop the flow. He had surgery every 6 weeks. My son got a very serious infection that no one could eradicate. Fast forward to meeting Dr. Suen. He resected the left side of his face and cleaned out all the infection, the dislodged coils and all visible AVM.
I would be happy to talk to you if you would like.
Wishing you a Happy & hopefully Healthy New Year!
2 Likes
How terrifying. I hope he is well now. I emailed Dr. Suen. I hope to receive a response. Thank you so much for sharing as I’m sure the memories are difficult to relive. Wishing you a happy new year as well.
Monika
1 Like
Thank you, Amy.
I hope that Dr. Suen will be able to help you.
Please feel free to touch base anytime!
1 Like