We took a trip to Denver in Sept 2007 to meet with Dr. Yakes and find out if treatment with him was the right option for me.
Our first stop was dinner with Stephanie and her family. Stephanie is an AVM survivor who has been through the entire process and can now claim to be "AVM free!" You can read her story here. We had a wonderful visit and I was so excited to meet someone who had experienced what I am going through. She had told me before hand that from 10 feet away you would never know that she had ever had a malformation. In my excitement of meeting her, it took me at least 3 full minutes to remember that I was supposed to be looking for evidence of her previous condition. She looked THAT good that I totally didn't even see it until I looked for the scars. We talked about her treatments with Dr. Yakes and what the experience was like for her. She showed us pictures taken during the time she was going through the treatments, and really explained what would happen along the way, including the unpleasant parts. It was great to hear what this journey would be from a REAL person that actually eperienced it. It is one thing to read all the medical mumbo jumbo and have the doctors tell you what is involved. But it is an entirely different thing to hear about it first hand. And talking with her was the best part of the whole trip!
The next day we went down to Dr. Yakes office, and the visit went very well. And let me just state for the record that his office staff, and really all of Swedish Medical, are the nicest and most helpful people ever. Seriously. I had prepared a long list of questions to ask, ranging from why his treatments are different than my previous ones, explanation of recanalization & neovascular recruitment, what I could expect for each treatment, what complications and risk there were, how many people does he see...and many, many more. Between his staff and himself, they let me ask all the questions and provided answers to the best of their ability. I did leave feeling much more informed and more certain of what I did already know.
Dr. Yakes characterized my AVM as large, high flow, and "involved." But he did say that he has treated others much worse, and others much smaller. While I got the feeling that mine is on the large side of the spectrum, he did make me feel that it was more in the middle than I had originally thought. He estimated that we would be looking at two plus years of treatment with a frequency as often as every four weeks. He was hesitant to really put a time frame on this. And I understand that would be a difficult thing to do. First of all, each patient responds differently to treatment. And on top of that, the treatment itself can stimulate the AVM to be more active. Trying to pinpoint a time frame and stick to it, would be nearly impossible and would most likely only end up causing frustration for a patient that would hold onto that timeline as an absolute. So we took the two years and know that it may be more. He was also quick to point out that he is not the "pretty" doctor. While his treatments will change the way the AVM looks, it will not make the mass "go away" all on it's own. There will need to be plastic surgery after the fact.
So the game plan is to make it to Denver as close to that four week frequency as possible. We will embolize with the alcohol, scarring the vessels at a cellular level and trying to stay a step ahead of any stimulation that this may cause. We won't anticipate any road bumps along the way, but will deal with them if they come up. Plastic surgery to remove the bulk, most likely replace bone, muscle, and skin tissue will be a necessity once this is all said and done. And while I know that last part will be a peice of cake compared to the other treatments...it feels like the scariest part!!!
I'll post updates for each treatment, summarizing what was done, how it went, and any other details that seem important! Click on one of the links below to read about each Trip, or click here to go to Trip 1.
Trip #31 for Surgery just completed! Look for an update soon. In the meantime, ck out Trip 30's report.