Hello to all of my AVMer’s!
I haven’t blogged in a while, but wanted to share some news with everyone. It is about 3 weeks late, but whatever!
So my last embo #17 was on July 9th, and it was pretty much routine. But I had called the office in advance and asked about getting a chance to have a mini consult with Dr. Yakes to talk about a few concerns I had. They moved me up to the 6 am check in (so cool) which gave me the opportunity to chat with the doc before he started the day. I was mostly concerned about the Wart Hog (little wound on my cheek) and why it wasn’t healing. Yakes agreed at this point there should be no AVM interference and I do not need to be concerned that this will turn into a big necrotic mess with potential arterial bleeding. Cause of course I’m imagining all the worst case scenarios and the “murder movie” bleeding episodes. He assured me that was NOT the case at all. Whew! He has referred me to his Plastics doc who I will see next week to check out what may help the wound heal up.
Yakes typically doesn’t give out “status” reports and doesn’t like to offer a “% done.” And I knew that going in and have been a very good little girl and not asked or freaked out (outside of my head at least!) with the not knowing. Regardless I KNOW I’m getting better. I can see the positive changes, feel less blood flowing, no scary bleeds for a while, can’t even find the thrill, and of course my lip is healed with no more necrosis. So although I couldn’t say “where” I was in the journey, I knew I was on the right course.
BUT…drum roll please!!! Josh threw out the question that morning. And I did “big eyes” and thought to myself “you’re not suppose to ask that!!!” However Yakes just took my hand in his comforting way, and said “we are definitely passed the 50% mark.” How freaking cool is that!!! Totally made my day and reinforced what I already knew. This is working.
So I just need to hang in for the ride. He said he has gotten all of the big stuff and now is concentrating on all of the smaller parts. And of course these are sometimes more time consuming and harder to get to. The maze of vessels and how they are able to get to the right place to embolize…well, it amazes me what they can do.
That’s my update! 50% and gaining on this beast! I know the route I have chosen seems long (going back for embo #18 this week) but I know it’s the right one for me. I have complete confidence in Yakes and am encouraged every time I see him, his PA’s, and the team with Dr. Reed.
I know it isn’t the same as those of you have are making the long and difficult road to recovery from the side effects of a brain bleed or treatment, but the message is the same. We all just need to hang in for the ride because in the long run it will totally be worth it!
Love you all,