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AVM Survivors Network

Advice on facial AVM after two unsuccessful alcohol embolisations


#1

Hi, I'm from Perth Australia and new to website. I was diagnosed April last year that with a very high flow AVM involving 2/3 of right cheek muscle. Symptoms were mild though, periodical swelling and mild toothache like pain. You can see more details on my profile. I received conflicting opinions about how to and when to treat, and was pretty confused. In fact Im even more confused about what to do now. I heard embolisation with ethanol was best and decided to treat it early. I've had two treatments by a specialist in China (very unpleasant process and slow recovery), the Dr's conclusion was further treatments would be too risky and he doesn't think he can cure it, so he has pretty much sent me off.

It's now 13 days after my second treatment, and I have these hard lumps I can feel in my cheek, will they disappear eventually? I've also had episodes of severe pain, throbbing and burning of the cheek and neck area, and pounding heart post treatment, the specialist just said to monitor it. These symptoms have now resided but I still feel a tightness in chest when I sleep sometimes. I'm wondering if others had similar experience? Also if the AVM is more prone to bleeding or growth after unsuccessful embolisation treatments? At the moment Im kind of regretting getting those treatments done, as there seem to be no improvement or visible reduction in the size of the cheek for such high risk procedures. I'm wondering if I should still continue to seek treatment elsewhere or just leave it and monitor it since symptoms are mild? If you have had a similar story, would love to hear about your experience/advice and any suitable Drs you'd recommend?


#2

Oops, thanks Eileen :) I've posted same message on Facial and Neck too, thought I'd try my luck on both... I've just read your story, very encouraging.


#3

Hi Janey. I have an avm that sounds very similar in size, Location, and muscle involment to urs. It was highflow and involved my masseter and surrounding cheek muscles and even up into my temple. I went throuhh about 13 years of misdiagnosis in which time my right cheek went from a barely noticable slight swelling, to the size of a baseball. It literally looked like I was walking around with an apple in my cheek. It was extremely painfull and physically and emitionally devastating. After it was finally diagnosed as an avm and after being turned away by several different interventional radiologists that attempted to treat it unsuccessfully, I was finally blessed with someone telling me about Dr Wayne Yakes in Colorado, usa. He used the ethanol alcohol embolization process to completely obliterate my avm over the course of a year. I saw him for a series of agressive treatments in which I flew out to see him every four weeks. It was a frustrating process that did not show immediate results. But I was assured by Dr yakes that this was to be expected and yhat eventually the avm would “roll over and die” and it sure did. Not all the drs are as adept and precise with the ethanol tre as tments as yakes. He was one of the pioneers in developing this treatment and hhas been perfecting it since the 70’s. If u would be interested in getting his contact ininfo, let me know. I am convinced he could help u and doesn’t consider any case beyond help. He is also willing to and has traveled overseas to treat patients that have no other options.


#4

Hi Janey , I’m from NSW , I do not have an AVM on my face but I do. Have one in my pelvis , on my
bladder and continuing on down to the left side of my buttock . It’s also high flow . And is involved in the

muscles as as well . When you have sclerosing done in my experience the area that is sclerosed goes hard but eventually subsides over time . ( they never told me this on my first treatment ) did they not tell you either ? I have had many treatments but to no avail however mine is in a different spot so yours may be worth trying a few more times ? The interventional radiologists that I seen at the prince of Wales said I would at least need 5 or 6 treatments with a period of 6 ish weeks between each one to know if it was going to be successful or not .
I hope your pain settles down , when it is throbbing have you thought of wrapping up an ice pack and putting it on and off your face ? I have to do this when mine is swollen and paining and it seems to give temporary relief , as it numbs it .
I don’t know if I have helped in anyway but I hope you are feeling better Lis


#5

Hi Lis, great to find a fellow Aussie shares a similar condition. Thanks heaps for your reply. It's now 10 weeks post my last embo, and the hardness has disappeared! Although the cheek is still slightly larger than before. Yeah they never told me about the hardness, was only told to expect swelling. Does your interventional radiologist do facial AVMs too? Or would you or he know anyone who has experience in facial AVMs in Aus?


#6

Hi Stacey,
Thanks for your message. It's very helpful and reassuring to hear from someone with similiar AVM and treated! Can I please add you and message you for more info?