Hi everyone, hope you’re doing well & staying positive! :) I hope for advice with decision making. I was diagnosed with high flow AVM in my right cheek muscle last year at 28yo, when my face swelled a bit for a few days, no other symptoms or bleed. I had 2 alcohol embolisations which caused more symptoms, for a couple of months it was bad but eventually subsided. The AVM is still there, but I’ve been blessed it’s mostly symptom free and not really noticeable by outward appearance.
I recently had a MRI, and my local specialist said the muscle containing AVM has expanded & there’s still some swelling but he does not think the AVM itself has grown since diagnosis. His approach is wait & monitor, & thinks my AVM is unlikely to grow or bleed. He also said “surgery would be mutilating but no one would do that to you”. Meanwhile Dr Suen has kindly reviewed my scans and his recommendation is totally different: surgery is an option & to treat before it potentially gets bigger. Dr Suen said that he can try his best to ressect the AVM, although cure is hard to obtain, the muscle will need to be removed and then reconstruct the face with fat from stomach wall. Because the AVM sits beneath the facial nerve, I would expect some facial droop from nerve damage but he feels this would be temporary for 3-6 month & that permanent facial paralysis would be uncommon with his experience. He has arranged for a consult later this month!
I know I am very lucky to have options but I feel a dilemma between the two approaches: to wait & monitor since fortunately my AVM is behaving not causing much problems & seem to be same since diagnosis, OR treat it early by surgery with hope for cure. I’m worried about the surgery risks of facial paralysis & also I heard it can grow back more aggressively if even the tiniest bit is left behind? I know the decision to treat is a personal one, but would really appreciate to hear from anyone who has similar AVM or been through a similar situation, how/if it has progressed or grown or treated. Any feedback would be greatly appreciated & thanks for taking time to read this!
I also have some questions if anyone is able to help answer: 1. I noticed some speak of different stages of AVMs, I assume mine is stage 1. Are there any protocol where treatment is recommended for certain stages?
2. Apart from cosmetic issue with facial AVMs, what are other health risks?
3. Is there risk of facial AVMs bleeding & how do you know if it's bleeding?
4. Do all AVMs eventually grow? Is there a difference in prognosis for AVMs diagnosed later in life as oppose to younger age, or trauma related AVMs?
I definitely would not wait and monitor, it’s only going to get worse, if left untreated. Get a second opinion from Dr Wayne Yakes. I was treated for an AVM in my left masseter muscle 5 years ago, embolization only and I have not had any re-growth or problems since. I enquired about surgery at the time, but was told it would cause severe disfigurement and no one wanted to operate. A cure is possible, according to Dr Yakes, with embrolization alone.
Hi, I’ve just returned from treatment with Dr Suen,to England. My advice is do not wait and see. It will grow. I started having massive nose bleeds, which were life threatening. All AVM’s are different but tend to do the same, which is damage. Dr Suen has just removed 90% of the avm but there is still some in my skin. I will be returning to the states in about 3 months for further treatment but nothing like the last lot! Treatment has been pretty gruelling and my face has been re structured. It is not an easy option, but without it I probably would have died from blood loss. Dr Suen is amazing, kind and humble. A nicer doctor you will not meet and his knowledge of AVM’s is one of the best in the world. Please go and see him. If you want more info I’m more than happy to talk. Good luck. Louise
I have an AVM on my left ear, scalp and in my left cheek in the salivary gland. I had surgery with Dr. Suen in 2007 which saved my life. My ear AVM had hemorrhaged several times and the skin was dying so I was in danger of continued bleeding. I lost the top half of my ear and some of my scalp and had a skin graft. Unfortunately the AVM was not obliterated totally during surgery and has recurred. Dr. Suen is a wonderful man and doctor. But AVMs are very complex and difficult to treat. I have not had any further treatment as I would also lose all the rest of my ear and would be in danger of damage to the facial nerve. I'm taking a watchful, waiting approach at this time. I'm hoping in the future there might be some other types of treatment available but that's my personal choice. There are some people being treated with a combination of Doxycycline and Propanolol which seems to keep AVM growth in check in many people which might be a possibility. I wish you the best. It's a tough decision.
Thanks Loulou, sorry to hear you've been through so much with your AVM. Glad to hear Dr Suen is doing amazing job. All the best with the rest of your treatment.I just read your profile,so you had no symptoms until your suffered bleeds which led to diagnosis?
Thank you for sharing. I sincerely hope more options will open up for you in the near future. Do you know if doxycycline & propanolol are used for prevention on AVMs are not actively growing?
Hi Janey and welcome. I also have a facial avm and as you can see we all have different symptoms, experiences etc. Mine caused me minimal bleeding over 25 years ago and I had major surgery (similar to Loulous but not as extensive as the lesion was small). After that we left well alone and it grew very slowly but this did not impact on my life. I had a massive nosebleed a few years ago and the powers that be decided now was the time to embolise with ethanol, I personally wish I had left it and not had the ethanol as this has caused me necrosis and bleeding which I never had before but these treatments all have associated risks etc. As you can see, we all face ( pun not intended) very difficult decisions and it is a personal choice. When I met Dr Yakes last year he said he tends not to interfere until it becomes a problem. We can only tell you our experiences for you to decide, and we are all so different and yet the same!! Best of luck to you.
Hi, I had no probs with my avm until I discovered a pulse in my cheek. By then I was 45 with children and very sporty. After 2 embos it went away for 10 years then started up. I was treated at another hosp with onyx embos 4 in 2 years. The heavy bleeding didn’t start until September last year and just steadily got heavier and heavier. Then they said they could do no more. Hence me going to the states for radical surgery as the last embo over here they put far too much onyx in my face and completely disfigured me. All the best Janey. Louise
It really worries me that your AVM seemed to disappear for 10 years and then return with a vengeance. When I finished treatment I was told I was cured and while there was no guaranteed that I couldn’t get an AVM somewhere else in my body, the one in my face was gone for good. What kind of embrolisation did you have initially and where was this done? I’m sorry to be very direct, but when they said there was nothing more they could do for you, what prospects did they give you?
Hope your surgery in the US goes well. All the best Sara
No problem at all. The first embos were done in London and they used a coil and a spring, but that was years ago. For the last two years they were done in Leeds, UK and they were all onyx, far too much as it turns out.
We’re just back from Little Rock after re section and facial reconstruction, there was a lot to put right. But it necrosed in several place and I had a further op for another 5 hours. The first op was 12 hours. He discovered that onyx had got into the tiny vessels and stopped the new skin flap from healing. He seems much happier now, though now I’m home I’ve started fretting as the stitches in places look iffy again. So I’ve emailed Dr Suen pictures today, hopefully to get some reassurance. I miss Dr Suen being so far away! I am going back for further treatment in about 3 months as there is still avm in some skin. But he managed to remove about 80%. So we just have to stay on top of the situation.
Leeds or indeed in the UK, seem to have no specialists in facial avms and they couldn’t offer anything at all. So I was left floundering with regular trips to my local hospital for transfusions as the nose bleeds became chronic and the last one I lost 3 pints and passed out from sudden blood loss. So I had no choice I had to seek treatment in the states and I believe Dr Suen is one of the best. He was amazing and I really wish all doctors could be as attentive and caring as him. Hope this helps. All the best Louise
Thank you very much Louise. Wishing you a speedy recovery, I really hope it all works out for you. I used to live in Harrogate, but after hearing your story I feel very lucky that my AVM was not diagnosed until after I had moved to London. On a separate note,I am very surprised Leeds did not refer you to Dr Krassi in London, he only retired in March this year - he worked with Dr Yakes. Maybe that would have saved you a whole lot of trouble.
For Janey, I was treated with ethyl alcohol embrolization as opposed to coils, glue or any other temporary agents.
Hi Janey, You have a tough decision to make which, as you well know, only you can do. It is not an easy decision to make so you are doing a good thing by asking advice from members of this site. I do not know how well versed the doctor or specialist is who advised you to leave the AVM alone, but I do know DR Suen is like Dr Yakes in Colorado and is somewhat nationally or even world reknown for his treatment of AVMs. So if I were in your shoes I personally would lean very heavily on what he says and recommends. I have a high flow AVM and low flow VM, in fact had two high flow AVMs on the right sideo of my face/head and recently a new one that developed in my left jaw. I had a major resection while a teenager at age 14 and again at age 18 which left me only slightly disfigured. That was back in 1971 and '74 long before the great technology and expertise they possess today. I 2009 I underwent my first embolizations and most recently two weeks ago. I can assure you that unless your AVM is different, it will eventually grow especially being high flow. Plus depending on the growth, mine grew new arteries in my face which serve no real purpose, complicate the blood flow, and in the end place greater strain on the heart by pulling blood away and feeding this blood into surrounding capillaries and such no designed to carry arterial blood which in turn causes the AVM to grow and just exacerbates the situation. Also, when Dr Suen talks about the potential of developing face droop, etc., he is giving you the worse case that could happen, but that doesn't necessarily mean it will. So, you have a lot to think about. My AVM developed an aneurism and AV shunt which are both serious and musy be treated. I am 58 and mine continue to grow and recruit new vessels to feed off of so my advice is to lean towards the medical advise Dr Suen has to offer. Praying for your decision. r/ Steve
Thanks Louise, wishing you a speedy recovery from surgery. I might message you with more questions later :P
For everyone: Does anyone know if doxycycline &/or propanolol are used for prevention on AVMs that are not actively growing?
- Also I got an opinion from Dr Yakes today. His assistant mentioned previously from the scans that I'd need maybe 5 treatments, but today he wouldn't give me an estimate as its hard to tell but a rough range of 3-10! Also a new concept I learnt today, I thought the swelling and expanded cheek muscle were caused by my last alcohol embolisation, but according to Dr Yakes AVMs can stimulate growth of tissues around it. So even though the AVM itself has not grown, the muscle around it has. The swelling present can be caused by hypertensive flow of blood in AVM not the treatment. He also thinks that bleeding risk of my AVM is low, and the health risks are cosmetic and nerve injury if the AVM presses on it. Has anyone else had alcohol embolisation cure their facial AVMs and how many times did they have to do it?
Hi Steve, thanks so much for your detailed response and prayer. Sorry to hear you've been through so much. All the best for your current treatment. What type of embolisation are you getting and where are you treated? Will pray for you too :)
Janey, members have had anywhere from a couple of treatments with Dr. Yakes to more than forty. It is a difficult type of treatment to do if you live a great distance away, as treatments need to be spaced just a couple of months apart to make any headway.
Surgery sometimes results in regrowth. That is why an overall strategic plan is important. Both surgery and alcohol embolizations have their limits and their drawbacks. There is no one clear method that eclipses all others.