AVM and stroke

Since I last mentioned my AVM in the forum, I’ve made some progress, I’ve been waiting for open brain surgery now since Sept 22, it keeps being put back month to month. Since my stroke in 2019 I was left without any answers as to why I had a brain bleed in an area of the brain they couldn’t understand as to why ? It was in the frontal lobe!

Anyway after a further episode in 22 and after many more tests they diagnosed the AVM and booked me in for surgery. It’s rare but I just wished they had been more thorough when I asked in 2019. The trouble is after the stroke you’re in no position to make a fuss and you take the consultants word for it.

I just hope the operation is soon as I feel like I’ve got a time bomb in my head and the headaches are awful. I know it’s not that dramatic but it leaves me feeling uneasy about the headaches and the future. Fingers crossed it’ll be imminent.


@Huggybear welcome back it has been a while since we heard from you.

It’s unfair you’ve been left to wait, I suppose NHS is in a state so they just leave us. I’ve found we have to shout up for what we want.

I wish you luck and kind wishes keep going Loraine

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@Huggybear so sorry to hear your waiting is going on and on, wishing you all the best, hopefully you’ll get your op soon.

Take care

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Very true Loshy, hopefully they’ll let me know soon. Hope you’re ok.

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Thanks Mahoney much appreciated.

@Huggybear it’s good that you now have some answers albeit a bit late. Really hope you don’t have to wait much longer for your surgery so you can start the next stage of your recovery.

All the best.

Ann xx