Hi, I'm from Perth 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?
Janey, I suggest you seek a long distance opinion from my son's doctor, Dr. Suen, in the United States. If you friend me, I can send you his email. I do not believe he would advise you to leave it alone, as avms can progress rapidly after treatment. I am sorry the ethanol treatments did not produce the desired result. There are other types of treatments that can be tried.
I agree. I had an unsuccessful embolization for my ear, scalp and salivary gland hi flow AVM with embolic glue and because it was an incomplete embolization it made the AVM grow back more aggressively. Dr. Suen is very good and would be a good doctor to consult with even though he is a long way from Perth. You can't just go by how the AVM looks from the outside because the growth can be deeper than it appears. Best wishes and take good care of yourself.
Hi Janey, Welcome! I also had a facial AVM (forehead), and had problems post embo (glue). At that point I found this forum and got a quick education in AVMs and their treatment. Members urged me to consult with Dr. Suen who is one of the leading facial AVM docs in the world. He is a great resource!
Don’t be so quick to second guess your treatment choices. You no doubt went to much effort and expense to get this far. Let your body recover from this round of embos and then work on planning next steps. I assume some sort of follow up is scheduled? Will you have another scan? If you do, get a copy (CD) so that you can send it to Dr Suen, or any other expert you may want to reach out to. Also start collecting copies of the embo reports. Take pictures of your face on regular intervals so that you will be aware of any changes over time.
The lumps you are feeling are probably thrombosis (blood clots) from the embo. They should absorb over time. Always reach out to your doctor’s office if you are concerned with any symptoms you may be experiencing. I also learned that each doctor’s field of expertise is so focused. My neuro IR wasn’t equipped to deal with the complications that I experienced. Reach out to your primary care doctor if you continue to be concerned with the tightening in your chest and palpitations.