The waiting is hideous!


You’re right, the waiting is hideous but I have to say, it feels to me as though the more senior doctor “gets it” and you’re on the road to starting, which is great. Honestly. It took me 4 months to get to hospital, a month to get an MRI, another month to get the MRI reported back to the consultant, then another month to get to (in my case) Nottingham neurosurgery. See here. After seeing the neuroradiology specialist, it took a further 5 months to get to first treatment.

Gamma knife is pretty uninvasive and suitable (so far as I know) for smaller, finer vessels, but it takes year(s) to be effective. There are other treatments but may not be suitable / possible for your AVM and some are more invasive, dangerous.

Welcome to the club! There are many of us who’ve been through the same OMG moments with the same worries. See my story link above.

We are here to support you, however we can. However, you have almost certainly had the AVM for a long time, if not forever, so the likelihood is not that it will do any damage immediately. Honest. If you get anything significant, sudden, go to A&E. Otherwise, dont worry about it. Its been there a long time.

Really hope this helps. Very best wishes,


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