Mick,
Tell me how slow things are going and we can probably play Top Trumps! How long did you “wait a little for”? I suspect you need to get into the groove of how long it takes to get anything done on the NHS. I’m on your side, honestly.
You may be being a bit optimistic about how promptly things will move on. Albeit you know that you have a stroke risk from either the AVM or the aneurysm, I guess it doesn’t mean that either will blow immediately (or, actually for quite a long time. Years?). So, the NHS will deal with you in that light.
My story is here: My Anniversary in two parts. 1. the waiting part for a decent diagnosis, Sep to Nov 2016 (but it started in Sep 2015 or April 2016, depending on when you start counting) and then 2. Feeling less well up to actually having an embolization, Jan to Apr 2017.
I’m not sure if it is better to chase NHS appointments every step of the way because it can be remarkably slow and depressing. I think the main thing is to realise that there are people who are in danger from a bleed that is happening now who the neuros are focussing on today and a “risk” is just a risk and goes lower on the scale.
So… be your own advocate. When you feel poorly or things change, tell the doctor. If anything becomes sudden or severely different, go straight to A&E. (Do not pass “Go”. Do not collect £200.). Have a look at my waiting journey and see how effective, or otherwise, nagging GP or hospital was. I would say the GP I saw in March was the person who finally got me seen. She plotted over my head with her stethoscope and we determined what we thought was a much larger area of bruit on the back of my head. She was the best of my GPs and clearly decided to find out about AVMs and get me dealt with appropriately.
If you’re in a practice of several GPs, see if you can see one of the other doctors. I randomly chose each time till I found one that was interested to really poke the hospital. But, it may well be that you still rank much lower than a bunch of other people going through your local neurosurgery service.
I would say that not all of it is “in the mind” (obviously) but to the extent that you can maintain a positive outlook, I do believe you will fare better in yourself. It’s ridiculously difficult but I do believe in positivity as a mitigation. You are much better not getting stressed about it all or thinking about it 24x7x365. I have failed at this for about 2 years but I do believe it to be true. So your GP is trying to help in that way. Honest.
End of thoughts for now.
I’m with you.
Richard