New And Lots of Questions re DAVF


You do have quite a list of symptoms, don’t you? I do understand how scary it is.

I took quite a long time to get diagnosed. Back in Oct '15 I know I could hear a faint pulsatile tinnitus. Then it got louder. Then it got louder. The beginning of my story is here, if you want to read. I have to say, it doesn’t necessarily come across in the dialogue here but I was pretty scared at how big my AVM was. I’d googled my symptoms and discovered AVMs and it was that which pushed me to the GP. What I really wanted to know was “how big or dangerous is it?” and I think the honest answer is that at the start it wasn’t in the slightest bit big.

The second part of my story is about approaching treatment and getting the treatment; early 2017. I felt worse over the period to the embolization and by the time I had an op, it was inflating quite an area of veins on the outside of my head, and starting to reach down towards my neck. Again, everything progressed very slowly.

What did I learn from the process?

  • You need to keep on your case and push things through. I’m currently going through some residual scans and because I feel pretty good in recent months, I’m just letting the process run without nagging every step of the way as I was doing through late 2016, early 2017. I think I’ve now waited 2 months for any feedback from my recent MRIs and I’m still waiting. So if you feel poorly and need it moving along, nag them. I can’t say it makes a lot of difference – it can still be slow – but the alternative is dire.
  • Get your GP on side. I have a practice where you only effectively get to randomly see one of the docs. Actually choosing who to see is not the norm. Work out which doc is interested in you and stick with them. I had a couple of GPs who really took an interest and as you’ll see in the second story above, it was one of them checking me out with a stethoscope that I think got me moved up the queue.
  • AVMs are rare, so when you see a doc, you’ll get two reactions: never heard of it / don’t believe you or complete interest in the rare thing you’ve got. You can end up feeling a bit of a specimen but if you can find a GP whose interest is pricked by you (GP work must be very humdrum often) then engage with that GP to poke the hospital.
  • Unless you’re already lying on the floor having a stroke, neurosurgery people are not excited about a fairly mild AVM. It may carry a stroke risk but unless or until you’re a bit closer to the line, to be honest, they have lots of other more risky, urgent people to look after. Stand up for your worries but don’t be surprised if they stay quite cool about you. They’re busy saving lives.
  • If at any point you have sudden, severe symptoms, go straight to A&E. Do not pass “Go”. Do not collect £100. They will take you seriously and it’s the right thing to do.
  • The encouragement I got from the people I first met here carried me through. I owe some people a lot.

Hope all of this helps. Ask whatever you need.

Lots of love,