Dear fellow survivors,
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.
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?
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.
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?