I know what you mean! I consider myself an analyst and my coping mechanism was to understand what this was all about in a similar way. Honestly, I found about half the stuff I learned about through people’s stories to encourage me and about half of it frightened me! Overall, learning about it helped me to rationalize what was ahead. The road had suddenly branched off into a dark and foreboding valley but the rationalisation helped me realise I had no choice to travel a different way, the only way was to keep walking through and choose one of the paths that led out the other side.
I can’t tell you anything about the anatomy in a way that should encourage you or discourage you with the approach: I wouldn’t dare to do so.
What I can tell you is that it doesn’t seem unusual for the docs to refine their approach once the angiogram is done. (In my mind, this is exactly why the angiogram is valuable: it sets out the vasculature in much clearer detail than an MRI. It is much more invasive a process than the MRI but gives a much clearer view of arteries and veins). So I’m not sure that I would be perturbed by the change in plan in that way.
Did the doc set out the risks associated with the two approaches? It sounds like they’re no longer recommending the radiosurgery route, so may not have described the risks of one versus the other. However, really the only choice you have is which set of risks you’re most ok with. I see three sets of risks for you:
- The embolisation + surgery set
- The radiotherapy set or
- The “do nothing” set.
If 2 is off the cards, then you just need to satisfy yourself between 1 and 3. My DAVF was busy changing monthly, so I was very easily convinced that (in my case) just an embolisation was needed – the only route offered to me – to get me back on the straight and narrow.
I can tell you that embolisation + surgery is a common approach. The idea of the embolisation is to block off the flow so that you bleed less during the surgery. This is designed to improve your outcome: less rupture during the craniotomy, or less risk of an uncontrolled rupture. It seems a much better idea than without.
Many, many people have this approach and it seems to be at least as successful as any other approach. That yours is graded “II” indicates that it perhaps isn’t too deep or treading into your core capabilities. In this way, it seems in line with operations others have had. Higher grading indicates a higher than average risk of trouble from the operation. You can read more about the grading system in the AVM101 category on this site. I assume yours does have some deep drainage but isn’t in an “eloquent” area of the brain (= core capabilities).
I hope something I splurge out might help.
I wish you all the best with making your mind up and getting through the process. None of us find it easy at all. It is very much new, untrodden roads for us, until you’ve had to walk that way.
Richard