I have recently been diagnosed with an AVM in my cheek, I currently experience no symptoms other that a v.swollen left cheek. I have been for a preliminary operation where they inserted a tube and had an internal look squirting my head and neck with the colored dye, I have been told they will go ahead with embolization next, but I don’t know what to expect? Dramatic reduction in size? No reduction? Cure? at the moment I’m feeling very Self Conscious, Stressed and Helpless. I’d like to know if anyone has any words of wisdom?
Roland, there are a few folks here with facial AVMs including one of our community managers. If you don’t hear from anyone this week, let me know and I’ll put you in touch.
Hey! Just sent you an email. Hope it will help and let me know if you have any other questions.
There are quite a few of us on here and if you search the forum and blogs for (face, facial, cheek, etc) you will probabaly find some good discussions that may help as well.
This is definately a scary time for you but this is the place to get the support and help you need. Lots of wonderful people. Even the “brainers!” 
Hi Roland.
Dave here. I to had a day out for mothers day yesterday and sank a few lagers with our meal.
I have had coils and glue in the past but none of the procedures worked and my AVM just grew and grew to the point of my next haemorrhage would have been my last.
I hold the world record for the amount of Onyx Lava ever injected in a human being, 78 ampules of the stuff. The onyx works by cutting the oxygen supply to the AVM and killing it stone dead. They might have to do a bit of debulking at a later stage after the onyx has shrunk the AVM to a point of acceptability. It stays there permanently after it sets like stone.
You might have a bit of desensitization in your face as I have experienced. I could not feel a thing at first but as time as gone on I have got most of the feeling back. I look nothing like I did in my photo, I have a totally new face now from the one I had. I am still missing my top lip from the debulking but I get another one on the 20Th of may. Roland You are a very fortunate person to be receiving this revolutionary treatment that is only performed in three hospitals in the world at the moment.
Go for it buddy that’s all I can say. Dave
hi Roland,
I would be very interested to hear an update on your progress. How many treatments have you had to have & is it shrinking or better still dying. My daughter’s partner has one that sounds much the same as yours. Sadly they are going through the public health system & things don’t happen very quickly. He is going back to Plastic Surgeon here in Brisbane on the 27th July just after his 29th birthday, so as you can see he is around your age as well. So far he has had an ultra sound & an MRI & that showed it covered quite a large area. Somedays it seems larger than others, it appears to fluctuate slightly. He is going to be treated with laser both inside & out & they estimate approx 12 treatments. I am searching to find anyone else with a facial AVM that has been treated in this manner. Hope to hear back that you are doing well. Take care, Cheers Michelle
Hi Michelle,
Since I recieved my second Embolization last year at the Royal Prince Alfred hospital in Sydney from Dr Graham Parker using the the NHS I have no problems (touch wood) I still have a swollen cheek but this is due to the Onyx substance used to treat the AVM, this is something I will just have to live, knowing that the AVM is treated and not growing gives me hope that it may never come back. I’m not sure about lazer treatments? Is it possible for them to use Onyx? this is a revolutionary material that is changing the way AVM’s are treated, maybe try and suggest this if it is a possiblity? These things really are the pits and I really hope that your son in law responds to the treatments well and they improve his condition. He must make sure he is fit and healthy too - no smoking, not too much drinking, healthy foods and Vitamin Supplements are all essential to keep up the body’s natural defenses.
Best of luck!
Roland Walker
Michelle (Facial/Cheek) said:
hi Roland,
I would be very interested to hear an update on your progress. How many treatments have you had to have & is it shrinking or better still dying. My daughter’s partner has one that sounds much the same as yours. Sadly they are going through the public health system & things don’t happen very quickly. He is going back to Plastic Surgeon here in Brisbane on the 27th July just after his 29th birthday, so as you can see he is around your age as well. So far he has had an ultra sound & an MRI & that showed it covered quite a large area. Somedays it seems larger than others, it appears to fluctuate slightly. He is going to be treated with laser both inside & out & they estimate approx 12 treatments. I am searching to find anyone else with a facial AVM that has been treated in this manner. Hope to hear back that you are doing well. Take care, Cheers Michelle
My wife had a tongue AVM and she saw Dr. Suen, an ENT. He is the leading expert in these from our research. He has said to us that if his person does an embolism, they do not have to put you in ICU afterward, but others have to put you into ICU for possibly a few days. Personally, I would contact him in Arkansas’s Little Rock Children’s Hospital and ask his opinion - he is a kind and generous human being. You can google his name, James Suen on youtube and see him accepting an award. I think I am late for this conversation, sorry if this information is not applicable now. Good luck.
Check him out. Jay
Hi Jay,
Glad to read your imput. I am located in Brisbane Australia. You are lucky to have found a good doctor. Did your wife have the Onyx embolisation? Did that help & stop the growth? & how is she doing now? I hope all is going well for her. Take care. Cheers Michelle 
Jay Grosflam said:
My wife had a tongue AVM and she saw Dr. Suen, an ENT. He is the leading expert in these from our research. He has said to us that if his person does an embolism, they do not have to put you in ICU afterward, but others have to put you into ICU for possibly a few days. Personally, I would contact him in Arkansas’s Little Rock Children’s Hospital and ask his opinion - he is a kind and generous human being. You can google his name, James Suen on youtube and see him accepting an award. I think I am late for this conversation, sorry if this information is not applicable now. Good luck.
Check him out. Jay