I wish to share my experience so far in dealing with AVM and seek advice from the wealth of knowledge on this group.
I am a 24 year old boy living in Netherlands. I have had two embolizations using glue for my facial AVM which is spread across lower portion of left face, cheek and mandible. Since then i have had an apparently AVM free life (No bleeding, minimal swelling) up until 3-4 months back when i started to notice increase in swelling, pulsation, and mild bleeding earlier this week. Over the year 2013 I was in touch with Dr. Suen who i found thanks to this wonderful community. I have contacted him over email. I must say this community is a wonderful and Dr. Suen is so helpful.
Reading through this community I had come to realize by early 2013 that embolization by glue was only a temporary relief. Hence I was seeking other treatment options all across year 2013 to obliterate the AVM. I was advised to undergo radiation treatment by my local doctor. I approached Dr. Suen to cross check radiation option and he quite clearly stated not to undergo anything but embolozation followed by radical surgery. So I denied undergoing radiation or temporary control via embolization till I was in a position that I needed to undergo surgery. I started taking doxycycline 6 months back pursuant to Dr. Suen's advise and felt some relief. The AVM has grown despite the medicine and now i am considering next phase of treatment.
Reading through this community and communicating with Dr. Suen, I have to believe, that the best treatment options are – Blockage of the nidus by Onyx (Any suggestions on doctor?), alcohol treatment by Dr. Yakes, and radical surgery by Dr. Suen. I am torn between these options with following concerns in mind. Would be of great help if you could pour in your advice.
Onyx 1. Does it block the nidus or is it going to be like my previous glue embolizations where the doctor said that he had closed 90% of AVM. But 2 years later, 50% of AVM ‘came back’ as seen from recent angiography.
2. Is embolization by Onyx an alternative to surgery/alcohol treatment or is it only a temporary solution?
Alcohol
1. I fail to understand how this ‘treatment’ works differently from other embolization options – glue/Onyx. Does is destroy the nidus or does it only block the feeding arteries, in which case new feeders will always be discovered by the AVM later. 2. What are the limitations that alcohol treatment impose on future necessary surgery requirements.
Radical Surgery
Reading numerous profile on this page, I have come to develop full faith that Dr. Suen is the best when it comes to surgery for facial AVM. Still I am concerned if I should go for this option straight away or should I try the former two options. Dr. Suen said that my AVM is extensive and would require a radical surgery. I am not sure what his confidence level is in obliterating it. I still need to see him personally. My AVM has grown but I am still able to have a normal life in current state. The increased swelling can be ‘managed’ by emboliaztion (preferably Onyx?) and I could escape risks of surgery (Nerve damage, coming back with vengeance). Especially given I don’t know if the AVM will be fully obliterated is it advisable to undergo surgery or sticking with ‘managing the AVM’ a better alternative?
I am sure some of you must have faced this stage in the process of dealing with AVM. Would be great to know what you did and how things turned out?
I also have a left facial AVM in my salivary gland and also ear and scalp I had a embolization with glue and surgery with an excellent AVM surgeon and lost half of my ear and had a skin graft on my scalp. The nidus was totally removed and yet the AVM was not obliterated and came back right away. It's believed if even one cell of an AVM remains it can cause the AVM to grow back There are no perfect treatments out there for AVMs and no guarantees of a "cure". There are various methods of controlling and managing AVM growth and not having treatment can be an option at certain stages of living with an AVM, also. Because AVMs are so rare and so varied in location on the body there is no one gold standard for treatment. Our best weapon is gaining all the information we can and making educated decisions as to what is the best option for us as individuals. Keep learning all you can and consult as many AVM experts as possible. You will make the best choice possible and I hope the best for you in your journey.
Prashant, I am headed to Europe today and cannot address this discussion as fully as I would like. Some of it comes down to faith. Everyone here knows I put my faith in Dr. Suen. others put equal faith in Dr. Yakes, and I respect that. I do think it may be hard to get as many ethanol treatments as you might need while coming from Asia, so that is a consideration. Also, I am fairly certain that Arkansas. Will be more affordable. Sorry about the typos. I am on an ipad.
Prashant, your situation is almost identical to mine! Except I had radical surgery as a teenager to obliterate my AVM but it regenerated over 30+ years. I started having problems again and in 2009 had several embolizations with Onxy surgical glue. However, as you mention the doctor stated he was only partiallly successful in blocking the AVM and was hoping it would provide some temporary relief. Five years later my symptoms are increasing again and am in process of being evaluated to see what or where to go from here. I was told at Mayo Clinic and others that one day I would have to have another ajor intervention involving a radical surgery to remove my right jaw, ear, etc., and rebuild it as that is the only way to obliterate it, if it can even can be. My problem is that my suirgery as a teenager was so vast that now I have too many different connections a cross communicating vessels to get at them all, especially with just embolizations. Like you, I can live somewhat normal life, but at some point will have o pull the trigger for the more aggressive approach, the timing of when to do it become the challenge - it is a major life decision so I am holding off for as long as possible. I take chronic pain medications daily ranging from MS Contin (Morphine) to Lyrica to Cymbalta and still experience pain despite it all. My is on the right side of jaw my face and often between the pain, soreness, tenderness and pressure feel like something has to be done soon, but like I said I am holding out as long as I can. If the AVM were not enough to deal with mine is further complicated because I now have a blood clotting disorder so must take Coumadin (Warfarin) for life which seriously compounds any strategy the doctors might have in mind for addressing my condition. So, I can empathize with you and truly unbderstand all the questions you have, some of the emotions you must feel, the criteria you must be considering with respect to what you should do and the approach you should take. Please know from my email that Onxy glue alone is not teh answer; I believe what Dr Suen has advised is the best option as it is what I have been told by more that n one set of physicians. Hope this helps some. I’ll be thinking of you and following your journey. r/ Steve
I think that we all hope for obliteration and I am only speaking from my husband's experiences with facial AVM as well as from talking to Dr. Suen. Dr Suen told us that he would not call any patient with facial AVM cured, but he has some patients who have been treated so well that he's seen no new growth in a long time and he'd rather call it Remission. My understanding is that Onyx is better than glue because glue has more chances to damage surrounding tissue or cause necrosis. And alcohol does a good job but Dr. Suen is careful about having it used in certain areas of the face because it is more likely to have necrosis in those areas like lips.
He is also now using bleomycin, a chemotherapy drug to treat AVM. When my husband had his first treatment with bleomycin it was just in his ear which is a soft tissue and a good candidate for the bleomycin.
This last treatment a couple weeks ago, he had bleomycin directly in the artery in his cheek in an area that was hard to treat.
My husband's AVM is very extensive, including pretty much all of his left side of his face, forehead and neck and some of his right side. It is growing very rapidly.
But in just two treatments with Dr. Suen I have seen the most progress he has ever had.
I know of a woman with facial AVM who was treated by Dr. Suen with a radical surgery and embolizations and the results were phenominal. If you use facebook I would invite you to the facial avm support group and introduce you if you like, she has had a great experience!
I understand your thinking about not treating it too much and taking risks with surgery. I can understand wanting that when you're not having bleeds. However, I caution you that someday you might wish you had treated it sooner rather than later. And sometimes later it is in a worse state and more difficult.
The surgery, yes it has risks. My husband's first AVM surgery was risky. And he had some weakness in his face for 3 months because of nerve damage. But it was all temporary. Dr. Suen and his team are the most knowledgable that we have ever encountered, I would trust them.
Good luck with your decision. I respect how difficult it is. Please let me know in message if you would like an invite to the facebook group.
Dancermom,I agree with the fact that it will be difficult to receive treatment from Dr. Yakes given my location. But if there is an opportunity to minimize risks and yet receive the same result as from surgery, i wont mind moving to US for some time.
Nevertheless have a good trip to Europe. I am living in Netherlands and do let me if i can be of any help. Hope to hear more from you when you are back.
Hello! You have been through so much already and are obviously well researched in facial AVMs. I can share the little bit that I have picked up along my journey. My facial AVM (superficial left forehead) was embolized with glue. I was told to wait 6 months then have a follow up scan to see if the glue had taken care of the AVM. Back then I didn’t know exactly what questions to ask. I didn’t know that the AVM would keep growing if it wasn’t completely shut down.
I had a lot of problems almost immediately following my embo. It quickly became apparent to me that I was allergic to the glue. Desperate, I headed to the internet for answers. Thankfully I found this forum and was quickly routed to Dr. Suen. I learned that glue is always a temporary fix. (I don’t know about Onyx). I learned that alcohol can be an effective treatment but not for superficial AVMs as it can burn a hole in your skin. It wasn’t an option for me. Have you read Shalon’s story? She is a patient of Dr. Yakes.
While Dr. Suen is renown for being a surgeon, he also works with a talented team that can handle all aspects of AVM treatment from imaging, to injections and embos. If you went to Arkansas you would most certainly have a multifaceted/multi stage treatment plan. You meet with the entire vascular team and they plan out the treatment. One member told me her initial meeting was 2 hrs! While everyone’s treatments are different, you could possibly undergo and embo (glue/onyx/alchol/etc) one day then surgery the next. Or maybe come monthly for a while for bleomycin injections or embos, then have surgery down the road after they have gained control of the blood flow. Again, every case is different. The think that makes going to Arkansas stand out in my mind is that they have a TEAM approach and one of the best facial AVM surgeons in the world!
My AVM was a acquired via a childhood trauma. I let it grow for 30 years before I did something about it. Luckily for me it was not a complicated AVM. Dr. Suen removed it and as much glue as he could reach in a 3 hr. surgery. He is pretty confident that I will not have any regrowth. I do not even have to have followup scans.