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?
Hello! I don't know much about facial AVMs, so I can't really comment. I can, however, make general suggestions. 1. Have you considered getting more opinions? It seems to me that both doctors have differing opinions so it might be wise to contact a third and maybe even fourth doctor so that you can make a better, more informed decision. 2. Have you checked out the Facial AVMs Group?
Janey, you have raised very good questions. If you email those to Dr. Suen, I believe he will answer you. And, after reading the experiences of every facial avmer who has ever been on this network, I will tell you that I respect Dr. Suen's opinion on facial AVMs more than the opinion of any other doctor. We have a number of members whose avms were outwardly not much to look at, but inwardly quite serious. I do not think you can assume that your avm is stage 1, especially after having had sclerotherapy treatments. In fact, if it were stage 1, you would probably not have been diagnosed. You can get a great education on facial avms by looking at the members on the facial AVM group, clicking their pictures, and reading their profile stories. A little time-consuming, but well worth your trouble, I think. All the best to you, Janey!
Thanks for your suggestions. I have seen 2 other specialists in Australia, they didn't really give me definite answer, left it up to me whether to treat or not. I will certainly check out facial AVM group more.
Great advice dancermom, thank you! That's true I guess you can't tell just by outward appearance. Dr Suen has been wonderful in his email response to me, though I feel bad troubling him with so many questions. I will definitely have a browse through the profiles. Do you think I should post this discussion in the facial AVM group?
Hi Janey! I agree with everything dancermom has said. Dr. Suen is an amazing doctor and recently my husband's facial AVM has gone from being very large and growing quite fast, to smaller and not growing fast at all. This is with just 4 treatments with Dr. Suen's team! :)
Best of luck making your difficult decision and with your AVM journey!
Hi Janey! I know how hard it is to come to a decision whether to treat or have surgery on an quiet avm. It probably would be easier to come to a decision if your avm was causing problems at this time. I feel you are so fortunate to have a surgical option. I hope you can come to your decision and feel confident about it. I wish I had answers for you however all avms are different and even the most knowledgeable avm experts will have different answers. I wish you the best. Let us know what you decide.