Kell,
I could ask exactly the same question.
I think some people are lucky, or perhaps have dangerous but low flow / less significant AVMs – not to play down how anyone feels about their AVM at all: they all present a danger none of us want to consider – but some of us have more significant flows, perhaps. If you’re only part way through your treatment, I can’t really imagine how you’re getting on. I had my embolisation, as you know, have had the “all looks normal” post op scan and my head still feels quite weird. My doctor says I’ve got new flows going on that I need to get used to – that my AVM was quite a significant diversion of blood, of a reduction in pressure in some places and an increase in pressure in other places.
Even once we’ve had the danger sorted, I think we need to be sensible about what to expect.
You could be lucky: plugging all the gaps, taking the beast out might make everything feel spot on. However, I’d say surgery of any kind is imperfect compared to God’s or nature’s creation. The plan is you’ll be spared the risk of a future stroke but the consequences of the surgery will probably not be nil. The idea is that sorting it out is significantly better than leaving it alone.
This feels brutally honest and difficult to tell you in bare words, with no earnest tone to tell it with. I hope you read it well.
The other thing I wonder (and was thinking myself between my embo and my angio) was if you’re only part-fixed, the situation could be worse, could be more dangerous for a while. Having blocked off some high-to-low pressure short cuts, the pressure in the arteries could be higher than it was, so the impact on the veins in the bits-still-to-fix could be higher. That could be why you’re feeling especially weird: it could have made the parts that were having an impact a bit worse.
Other than the advice from my doc that I really do need to just allow time to get used to the new flows, none of this is based on any medical advice or knowledge: I’m just sharing with you my own thoughts on how the physics of this probably works: person-to-person support. If you’re ever worried about symptoms or whether to do treatment a or b, you have to rely on your doctor.
Hope this helps. I felt exactly the same and pre my angio, you’ll see I was convinced there must still be more embolisation to do, given how my head felt.
Hope others chip in, too.
Very best wishes always,
Richard