I had my appointment today with the specialist. He was called to surgery but I still met with his assistant. The list of questions I had were not all answered but I left a copy and they will be calling me back next week. What I did find out is there has been signficant changes in my AVM comparing from 1987 and today. It was explained that due to the size of my AVM (massive is what they said) everything is happening at a much slower rate than normal but it looks like it is working. The pain I am having could be due to the AVM shutting down and it is fighting against it. They are still not sure if more treatment will be needed yet. They want me to wait at least a total of 36 months before it is determined. The risk of bleed is the same and will not change unless it is completely obilerated. Actually no studies have been done regarding this issue so who really knows. By my calculations from what they told me over 4 years ago I am now at 59% chance of a bleed leaving me disabled (could be minor to severe) or 56% chance of bleed being catatrophic with an increase of 4% annually. I told her about some research I did regarding this where it said the chance of bleed was determined to decrease at the age of 55 and she agreed with it. The next two and half years will be nerve racking but at least I am starting to understand more of what I am dealing with. I will fill you in with more detailed information after they call me next week with the answers to my questions.
Hi, Lee Ann-
When the doctors told me it would be at least 3 years before obliteration, I thought I’d go crazy. But, I just passed the 2 year mark and I don’t think about it everyday. I go back for MRI’s & Angios every 6 months, but I’ve thrown myself into work and my relationship. It helps to keep my mind on other things. I’ve spent an inordinate amount of time on the internet looking at different papers and articles about re-bleed chances- after a while I just shrugged it off because the reality is that nobody really knows. Enjoy every day. Take care.
Hi Lee Ann
Thats good your gonna get some answeers to your questions might make you feel better
36 months does sound long but it will go by quicker thn you think mate
Were did you get the list of questions to ask are they from a previous forum, maybe i should ask this quack i’m seeing on Wed
Lee Ann-
Thanks for telling me about holding your grandbabies:) Made me feel much better! Any changes in your situation? Hope it’s all going well! Waiting is tough:( carolyn XO