Hi everyone, hope you’re doing well & staying positive! :) I hope for advice with decision making. I was diagnosed with high flow AVM in my right cheek muscle last year at 28yo, when my face swelled a bit for a few days, no other symptoms or bleed. I had 2 alcohol embolisations which caused more symptoms, for a couple of months it was bad but eventually subsided. The AVM is still there, but I’ve been blessed it’s mostly symptom free and not really noticeable by outward appearance.
I recently had a MRI, and my local specialist said the muscle containing AVM has expanded & there’s still some swelling but he does not think the AVM itself has grown since diagnosis. His approach is wait & monitor, & thinks my AVM is unlikely to grow or bleed. He also said “surgery would be mutilating but no one would do that to you”. Meanwhile Dr Suen has kindly reviewed my scans and his recommendation is totally different: surgery is an option & to treat before it potentially gets bigger. Dr Suen said that he can try his best to ressect the AVM, although cure is hard to obtain, the muscle will need to be removed and then reconstruct the face with fat from stomach wall. Because the AVM sits beneath the facial nerve, I would expect some facial droop from nerve damage but he feels this would be temporary for 3-6 month & that permanent facial paralysis would be uncommon with his experience. He has arranged for a consult later this month!
I know I am very lucky to have options but I feel a dilemma between the two approaches: to wait & monitor since fortunately my AVM is behaving not causing much problems & seem to be same since diagnosis, OR treat it early by surgery with hope for cure. I’m worried about the surgery risks of facial paralysis & also I heard it can grow back more aggressively if even the tiniest bit is left behind? I know the decision to treat is a personal one, but would really appreciate to hear from anyone who has similar AVM or been through a similar situation, how/if it has progressed or grown or treated. Any feedback would be greatly appreciated & thanks for taking time to read this!
I also have some questions if anyone is able to help answer:
1. I noticed some speak of different stages of AVMs, I assume mine is stage 1. Are there any protocol where treatment is recommended for certain stages?
2. Apart from cosmetic issue with facial AVMs, what are other health risks?
3. Is there risk of facial AVMs bleeding & how do you know if it's bleeding?
4. Do all AVMs eventually grow? Is there a difference in prognosis for AVMs diagnosed later in life as oppose to younger age, or trauma related AVMs?