I need to make a correction on my previous post. I should have said my type of nidus was “Type IIIa + IIIb”. So, if you refer to Table 1, Therapeutic Outcomes, on the link above, be sure to look on the row for “Type IIIa + IIIb” to understand what I am writing about. I recommend this link to a 2007 study on ethanol embolization to anyone who has an extremity arteriovenous malformation (avm) and is considering ethanol embolization as treatment. As I mentioned above, as well as reading about outcomes, please read the section on complications closely and consider the implications, discuss with your local family doctor or local vascular surgeon and then make an informed decision! Again thank you to everyone who has replied to this thread. I really appreciate everyone’s input. If anyone else wants to chime in, please do.
I’ve been looking for this slide show on ethanol embolization for avms! I finally found it again. VERY informative: http://www.miit.com/PDF/MIIT%202003/High-flow%20AVMs%20%20Modern%20Therapy%20With%20Absolute%20Alcohol.pdf
What do vascular surgeons think? I cannot speak for them, but I do know what they are being taught. This: http://books.google.com/books?id=Zq2jYo5VZ8kC&pg=RA1-PA606&lpg=RA1-PA606&dq=avm+complications+ethanol&source=bl&ots=hBefwdnTaf&sig=dCU8WoTCLOO8BFnXMH1q7c3tIGw&hl=en&ei=w0VUTNSJKoyJnQeEpYT7Ag&sa=X&oi=book_result&ct=result&resnum=3&ved=0CBoQ6AEwAg#v=onepage&q=avm%20complications%20ethanol&f=false This link is a preview of “Mastery of Vascular and Endovascular Surgery”, 2006, on Google Books. It has a very frank discussion of prognosis and treatments for avms. See both pages 606 and 598. Being an amputee because of avms in my leg, I found this sentence from the book interesting: “Amputation should not be excluded as the practical option, especially when the AVM is in an extremity and complicated with life-threatening bleeding or sepsis.” That hits my situation on the head.
I’m read this discussion several times and I am confused by the actual intent.
I think “success” means different things to different people and for some ‘success’ may just be making it through another treatment and having a little more of the AVM embolized. Success may also be just about surviving- staying alive, right?
It does not appear to me, from what I have read on here, that Dr. Yakes has any kind of ego attached to his treatment. He just seems to be a pioneer for treatment for extremity AVM’s and I salute anyone who devotes his life to try to help my fellow AVM’ers AND who takes the time to do it carefully and as safely as he can. Plus, it must take incredible courage on the patient’s part to follow thru with all these treatments without knowing the final prognosis.
And we all need hope and I would never take that away from anyone. Hope for the future, hope for a life without the fear of bleeding and growth and hope for better and easier treatments to come. If there were better options, we wouldn’t be having this conversation. But right now, I just think that extremity AVMer’s are fighting for their lives and I don’t blame them for taking this risk.
Our options for AVM treatment are risky and painful and insanely complicated. I think everyone makes their own decisions for different reasons and goes positively forward one day at a time just like you are doing Beth.
What isn’t right is that this option is not available financially to all that want it.
I think we need to look at the definition of success and trust me I heard my embos were a success too but not 100%…each embo has a risk as my neurosurgeon says “Mare, it is still brain suurgery” so I am grateful as to the success of any embo, ie I wake up…I have had some issues post embos, I still have muffled hearing, a problem with my vision…but I am grateful …Beth, I think the bottom line is there just isn’t enough education, knowledge nor treatment of AVMs and medicine is a practice and the medical field is learning through us…my dr. has a great reputation in NY and he is great but he felt nothing more should be done…I am going to another dr. who will so again, experience plays a part in all this. I love all my three neurosurgeons but I cannot force them to do embos they are not comfortable with… I am also a hopeful person that one day, and that’s why I want to raise awareness and money for research, that we are all cured"… I agree we deserve the best care, but me personally, post embo, if I wake up without any major complications…it is a sucess… If my AVM is totally gone, the I will feel “cured”…again this is my opinion and I respect your opinion…this is a great place to go to to vent and share… it “cures” me of my feeling alone… thanks and God bless…continued wellness.xoxox Mare
Joy and Mare, The purpose of this thread is to provide a forum for BALANCED information from a personal perspective in order to help others make informed decisions regarding treatment. It is not to pick on any medical facility or physician. I began this thread because newcomers to this site having extremity avms were so often encouraged to seek out help from Dr. Yakes for ethanol embolizations, but I didn’t read balanced posts that included information on the risks and costs (emotionally and physically as well as financially) of ethanol embolization. Also, in my own experience, I was guided down the path of ethanol embolization by the medical community and eventually greatly encouraged to seek help from Dr. Yakes (although I did not go to Denver), but the medical community did not inform me of any risks in a timely and careful manner and, in the case of some risks, not at all. I found that I had to figure many of them out by READING BETWEEN THE LINES during internet research. For example, I read studies published for the medical community that had a tone of positive excitement about ethanol embolization, but those same studies, if you redid the math yourself, did not have statistics in my opinion that warranted the “level” of positive excitement given (based upon cure rates and complications). I also read posts here and elsewhere from folks or relatives of folks who had gone to Denver and had ethanol embolization and, over the course of time in reading their posts, it was apparent that they suffered great pain, necrotic wounds and/or other complications and had numerous treatments yet to go although their recent treatment had been termed a “success”. I was gravely concerned about what seemed to be a gap between the reality of having ethanol embolization treatments and the enthusiasm for them. So, my quest is for folks to fill in the gap. This disease is horrific and I respect everyone, especially those in the medical community, who are trying to make our lives better. However, please, everyone involved should be honest with one another. Although ethanol embolization may be our best option currently and better than other treatments used in the past, it isn’t any easy treatment path to take and it doesn’t help everyone with extremity arteriolvenous malformations. Folks whose types of AVMs are unlikely to be helped by this treatment should be told as much so they can make informed decisions. In fact, we all need balanced information in order to make the right decisions for ourselves and for our loved ones. So, thank you for your posts. We need to keep sharing information–and hope for one another! My best to everyone…Beth