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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

Hi Janey.
Just red about your experience with alcohol and I DO HOPE YOU GET BETTER. Our little girl 21 months old now has avm in left hand and mainly the index finger.From GOSH London they recommended amputation as best solution which left us so upset. But we did research and contacted many docs .Eventually found this amazing professor here in uk prof Ivancev(who is Bulgarian like me and I m so proud) who started performing ethyl alcohol embo when Ryah was just under 1 year old. We had read about this ethanol embo and the pioneer doc who is for many patients "their doc"- doc Wakes. We were lucky to have him in the team of docs here for Ryah's embo twice-he really is amazing. Well , after each embo we noticed Ryah was very uneasy sleeper, she was definately in pain, also she had few really bad bleeds and 2 very nasty infections on her finger. Despite that we can see it is getting better-the colour is now less intense, the size is getting slightly smaller...But she needs multiply emboss. And because our consultant is retiring very soon , we are trying to find options to sponsor ourselves for treatment at dr Yakes clinic in Denver Colorado.
From what we know ethanol cures avm as it destroys the endothel cells which prevents from further revascularization.
Well this is our experience. If you wanted to ask us anything ,go ahead.
One more thing-I believe Shalon will be possibly helpful about the alcohol treatment of facial avm.
wishing you good health
best regards
Plama


#3

Hi Janey! Sorry to hear you’ve had a hard time recovering and that you are less than satisfied with your results. It’s unfortunate that your doctor decided that two embos was all that was risk appropriate. Alcohol embos, specifically in the facial area are typically done in “small doses” due to swelling concerns and airway clearance. So a high # is the norm. Stopping at two probably barely scratched the surface and explains why you see little difference in mass size. Additionally the lumps could be the scar tissue left from the alcohol destroying the tissue. The other pain sounds like nerve or muscle issues that will probably resolve. That pain is often from the swelling and pressure it puts on other tissues. I had upwards of 40 treatments and then required a surgical debulking to remove much of that scar tissue and mass. It can be a long road and is almost never a quick/easy fix when using alcohol. For me it was absolutely worth it. And the right decision after years of “bandaid” treatments. I would definitely suggest looking into more treatments, alcohol or other, as you will most likely experience additional growth in the future. It could be soon or years from now. AVMs are often unpredictable and can react badly to interference. Try searching for others in Australia and see which doctors they met with. There is certain to be some options closer to home that may work for you. If not, Dr Yakes in Colorado (alcohol embos) and Dr Suen in Arkansas or Dr Waner in NY (surgical removal) are all experts and worth considering. Good luck!


#4

Janey,

Thank goodness that you found our site here!

My best advice would be to get a couple other neurologist opinions!! I feel with a few other ideas, then YOU can make the best decision for yourself.

I have known about my AVM for around 35 years (I am 52 now). As you might know already, some AVM people live with their AVM forever with hardly any problems. On the other hand, like me, as they/I got older, the AVM gives more and more problems. I got my 1st seizure when I was 18 years old, and for the next decade after that, I continue to get more and more migrain headache and gran-mal seizures. My AVM was a very large one, so in 1990, I got brain surgeries. What a journey it was, but I am grateful that I took the plunge, because I believe I might be around 95% cured.

Good, good luck to your future.

Lisa


#5

Hi. My avm is also big 7-8 cm, I have pain attacks, migrain. Was diagnosed with migrain when I was around 8 years old, now Im soon to be 28. Found the avm in 2009 and got an embolisation in 2010, did not help. My problems/pain have not gotten any better over the years. Drs where afraid an operation would destroy my side-vision on my right side. And he didnt know if the pain would go away. So what should i do?

Any advise?:confused:


#6

Ask GOD for a direction or a sign from Him, to make you feel you are going in the right direction! I do believe He is there for us. (Over 2 decades ago, I HAD a brief Spiritual experience, so I realize better that He can help us more than we might think.)


#7

Hi Janey,

I also have a diffuse, high flow AVM in my right cheek and have endured alcohol treatments. To piggyback off of Plama and Shalon, any treatment option works over time. BUT it's definitely important to be receiving treatment from a specialist who is an expert at treating the type of AVM we have. I personally am not a fan of alcohol. It had negative side effects for me like skin damage and destroying healthy vessels etc. This past Dec. Dr. Suen used Bleomycin which causes a delayed healing time but otherwise no major issues. Seems to be having a positive affect on my AVM. The road is long as far as finding the best treatment for you. Takes patience but definitely make sure you're in hands capable hands before proceeding.

Blessings,

Jaz


#8

Janey,
My husband has facial AVM that started in the ear and cheek but after a badly done resection surgery, it has regrown and spread to most of his face (primarily left-side).
Dr. Suen put him on propranolol and doxycycline, and he did a 7 hour embolization with Onyx and ethenol, and he did bleomycin injections in the ear. So far this was the best treatment he's ever had but he will have to do this again and again, every 3-4 months for a long time. It's not going to be a quick fix.
I hope that you are able to find someone near you who is experienced in treating facial AVM. One thing I would recommend trying...reach out to the doctors here in the US for consult. I know that Dr. Suen he travels to international conferences about AVM. The other doctors mentioned (Yakes, Waner) might do this too. It is possible one of these doctors will be able to recommend someone, or at the very least, look over your records and scans and give you some long-distance advice. It can't hurt to try. Good luck!


#9

Hi Shalon,thanks for your very helpful advice. I admire your courage and wish you all the best for your treatment journey. Its almost 3 months post treatment now for me and most symptoms have cleared thank God. I only get mild symptoms now when I have my period or overexhausted. So Im processing what to do next. I have sent my scans off to Dr yakes and Suen for their opinion. I haven't found any drs in Australia with experience in facial Avms and confident in treating it yet. Am still bit discouraged about the treatments I've had as the cheek looks bigger than before and symptoms are more than before too. Was this a case with you after alcohol embolisations? And were you symptomatic from birth?


#10

Thanks for sharing your story lisa! All the best to you too :)


#11

Hi Hege, sorry to hear of your troubles. Im probably not the best person to give advice, am also confused and searching myself. But from the general consensus on this website, Dr Yakes from Colorado and Dr Suen from Arkasas seem to be the best for AVMs, maybe you should consult them for advice too? My local surgeon also told me facial nerve damage would be a problem if I opted for surgery. There are some really helpful replies to my post you can check out may be helpful. Good luck and God bless!


#12

Hi Jaz, thanks for your advice and sharing. I'm so inspired and encouraged after reading your story especially about being fearless, and unstoppable pursuer of my dreams! Good on you! If you dont mind me asking you a few questions: I'm really worried about risks of necrosis of skin/muscle/healthy vessels with alcohol embolisation, is it a high risk or depend on type & location of avm and the individual patient or skills of radiologist? Is surgery less optimal than embolisation for facial AVMs since by the sound of it, your AVM grew back quite aggresively after surgery? Good luck with your treatment journey and documentary!