Report from the Conference, New Algorithm
Dr. Poncelet (neurologist) discussed my case and MRI/MRA results with the neurological interventional radiologists and they recommend a "let's just do it" approach. If it is a fistula, we can treat it and improvement can begin. Her neurovascular colleagues say "hey, our surgeons are the best in the world, the risk are low - might as well go for it - we've tried everything else".
As you may recall, my algorithm was to wait until there was a progression of the problem. But that occurred on Monday, so it was looking like surgery. Until I reminded her of one item. We have tried everything, but we actually never finished our spinal tap. So, with that information, we now have a plan, which is much simpler than the old. It turns out that if they find the fistula during the angiogram they can fix it right then and there (in general) through embolization. Only in rare cases would an additional surgery be needed.
So, here's the plan:
1. Lumbar puncture
2. If Lumbar puncture is clean then...
3. Spinal Angiogram
If LP shows inflammation or antibodies, we may choose an alternate course.
My presentation is definitely unusual as doctors don't usually think "AV Fistula" until motor functions have begun to decline. So, if this does turn out to be an AV Fistula, I would be the subject of a paper so that other doctors could consider this possibility - especially with imaging techniques (MRAs) that can detect many fistulas.
And once again we learn the lesson of being on top of your own medical situation - if I hadn't forcefully pushed the Lumbar puncture, no one would have remembered that we did not complete it several months back.