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?