Ok. Not quite sure how I feel about today.
Saw neurosurgeon for the first time today. He doesn’t think my symptoms relate to my original DAVF but is of the view that to have any consequential change or another AVM is “vanishingly rare” to the extent that it felt to me as though he was dismissing any symptoms as wholly unlikely and therefore do nothing.
I’ve come away with a promise of a wider scan, by means of an MRI… So we get to look to see if there is anything going on in my head, whereas an angiogram would have focussed on right hemisphere only.
I asked about inheritance and he simply said it hadn’t been demonstrated in medicine, so dismissed that notion as pertinent to me, as well.
Another thing he suggested was that sometimes people have symptoms for things that you just can’t see a cause for. e.g. lots of people have migraines but when scanned, there is nothing out of the ordinary. So, I think he is saying “ok, you’ve got some symptoms but last time we looked, everything looked perfect, and even if we look again, we may see nothing.” Something like that.
So… kind of positive about an MRI, as I was suspicious that the angio would just look in the same place as before and it doesn’t feel like it’s in the same place as before.
Kind of positive that he is ok with me carrying on life as normal, driving, etc.
But bothered that he is judging me on statistical probabilities of what could happen rather than thinking I could be the one that actually has something further to do.
In regard to my son yesterday, a much more welcoming, supportive reception from the paediatrician, who again thinks the likelihood of him having something is “rare” but prepared to take the signs we can see as indicative of something to investigate. We have an MRI with contrast planned there and a review in a few months. I think her plan will be to keep him under review for a few years.
So… very satisfied with the paediatrician; quite dissatisfied with the neuro. Maybe I’m just a hypochondriac!
Meanwhile, I’m going to ignore my symptoms and carry on life as normal, on the grounds that maybe I’m just taking a while to feel better. I’ve no idea.