We are AVM survivors, here for your support.

What do you think?

I just edited my profile to include the following comment which may not make me popular with many, but which I sincerely think needs to be discussed. What do you think? Here's the comment: After being referred to Dr. Yakes by Dr. Vogelzang, I researched ethanol embolization of arteriovenous malformations and was not convinced it would be right for me. For example, the numerous visits to Denver would be a huge problem financially. Additionally, I was amazed to read here about folks having 17 procedures so far and yet they are not finished or they have had to go back for more procedures when more problems occurred. I question what is meant when someone comes back from Denver and posts about how he/she had been told IMMEDIATELY following the procedure that it is a "success". How can this be when he/she has a really bad time since coming home, is in much pain, develops necrotic wounds that do not want to heal and has to schedule even more trips to Denver? I think the bar is raised really low on what the Denver medical community terms a "success". I think we all deserve better than that. "Success" should be reserved for those times when our AVMs are destroyed completely AND they do not grow back. Anything less is just hype.

▶ Reply to This

Replies to This Discussion

Permalink Reply by Beth on July 31, 2010 at 8:24pm

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