Hello everyone. I had a high grade DAF identified during a scan ENT requested due to pulsatile tinnitus in right ear. Diagnosis was confirmed and I had a cerebral angiogram a few weeks later to confirm. I had an embolisation with onyx the following week. The team are pleased that it was successful and I have been scheduled for a follow up angiogram 6 months post op. I’m nearly 5 weeks into recovery, but still tire easily. The PT is gone, but I have 2 new noises, a very high sparkly noise in my head an a lower, more domestic noise (I keep thinking I’ve left ghe extractor fan on) in my right ear, replacing the PT. I’m trying hard to move on, but am struggling a bit. It was all very sudden and I am questioning every noise, pain, twitch. Any tips for getting back to ‘normal’? Is all this normal? Read lots of posts znd the tinnitus seems to be, so not as paranoid about that now. Thank you for listening.
Lisa,
I HEAR YOU!
I went through very much the same:
I gained a big alternate pulse: the pulsatile tinnitus went but I gained a very loud, very healthy-sounding other pulse. I had some dizziness post op and what I described as weirdness. So I hear you.
My own experience and take on this is that you’ve just had all the plumbing in your brain redone: what has been low pressure for a long time is suddenly back up to pressure and what has been high pressure is back to where it should be. It’s weird.
How did I get better? I did get better. It took patience, time, and putting much of the experience behind me. It’s very easy to listen to the noises: they just get louder if you listen to them. It’s very easy to worry about each weirdness or each noise. So long as your doc says they got everything needed in the one sitting when you go for that review, then you’re fixed. It takes time for everything to settle down and for the worry to go away. You’ll quite possibly have days of regression, where you experience some odd things that you associate with pre-op if you follow the same path as me, so you need to get anything that seems worrisome checked out but overall, my experience is that it just takes time for everything to settle down.
I got worried about things at about six months post op and got referred back to hospital for some more tests, but there was nothing to be seen, nothing to do and the best advice was to forget about it and put the whole experience behind me.
Hope this helps. Feel free to ask anything you like.
Lots of love,
Richard
Thank you so much Richard. Weird is the right word. So glad I found this site … Knowing other people get how odd I feel is a relief. I wasn’t told anything about what I might experience afterwards … only that I was fixed and could get back to normal. And to be mobile as at high risk of clots … I probably overdid it as was scared to sit down!!!
Sounds quite similar to mine, aside from I did hemorrhage
Pulsatile tinnitus before it happened, I had no clue what it was.
After the embolization recovery wasn’t/isn’t exactly linear.
But, somewhat similar - I had an electric transformer type sound in the same ear that lasted, but got better slowly for about a year.
I just had a follow up angiogram exactly four & a half years post embolization - it’s still holding 100%
And, I’m definitely better now - but, I wouldn’t exactly call it being back to 100%. I still struggle with anxiety, so I’m on meds. Plus, I don’t as diagnosed with multiple micro bleeds. My neurosurgeon stated that the micro bleeds aren’t exactly life threatening, but just to be aware.
I should add that I think I got the “sparkly noise”. That persisted for a long time post op – like up to two-three years, maybe! It was definitely one of the ignore-it-it’ll-go-away things eventually.
If you get anything that is worrying, the only sensible thing to do is to go and get checked out but if it is just minor stuff, honestly I think the best answer is to look forwards rather than backwards. Nobody told me what to expect either but I think the reason is that it is very variable and actually, a bit of weirdness is the least of our worries.
As a DAVF patient here, you’re rare among rare. It’s great to have you as a friend as much as you might appreciate us.
It’s great to have you on board and pretty incredible that you’ve taken yourself through most of this before signing up 
Thank you so much! I am feeling rare right now … another weird side effect … my hair is now full of static, never had that before. Sometimes look like someone’s rubbed a balloon over my head!
Thank you for sharing Mike, and I’m so pleased to hear it’s 100% holding 4+ years in, although micro bleeds sounds scary and challenging to live with. Sending love x