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
Hi @LisaG . I am the same, had embolisation, almost 8 months ago now. I am still very much recovering, and my INR keeps reminding me it’s a major procedure even if it doesn’t seem like it because of how it’s done. My recovery hasn’t been fully smooth, but very slowly getting there, still up and down, but more good days than bad now.
I too, got regular tinnitus afterwards. started about 3 months after, in my opposite ear, and it’s still there, though a bit quieter. I’ve encountered others with DAVF who had that happen after embolisation, so it seems a common thing. I also still have some PT, but of the higher pitched kind, which has now settled to a softer hissing, so I have faith that eventually most things might go back to ‘normal’ or at least a new ‘normal’. Finally feeling like the embolisation was worth it, and after talking with my INR about second guessing my decision, I was assured it was for the better as my symptoms were escalating so quick. I also get a fair bit of nerve pain, but doc is hoping that might eventually settle too.
Thanks Nicole, I appreciate your reassurance. I phoned my neuro nurse yesterday as I am still getting so exhausted after what for me is such a small amount of doing. I tried a flat walk of about 3km at the weekend that made me feel.like I’d ran a marathon. And I went to work at the office for the first time … 2hrs and about the same travel … knocked me back badly. Nurse said do less but try to build up slowly, which is what I have been doing … nothing I’m doing is sudden, I’ve been trying to do everything slowly … start small / short and increase if feel fine. Trouble is i feel fine until I don’t … it’s sudden, no I’m getting tired warning … hero to zero! Do you / did you get tired too?
@LisaG Oh, I can definitely relate very much to what you’re feeling, the exhaustion, and how suddenly it can happen. A few weeks is still not very long! Be gentle with yourself, you deserve it 
I also thought I built up to exercise/etc and doing things more slowly. Even now I find myself exhausted a lot, and just a couple of weeks ago mentioned it to my INR, and he reminded me as always “it was a major procedure”, with mine being 7 hours. I think I tried to brush it off a bit; and because I had a terrible time at the hospital with the nurses, it added to my belief that it was no big deal. But as my doc keeps saying, it WAS. The nurse you spoke to, I think she has it right. Take it even slower. I really have to teach myself to do that too. And yeah, sometimes, the bouts of exhaustion are unexpected, but it’s getting better!
I can also see from reading a lot of people’s stories, from here and the Facebook group, that everyone has a different recovery road. Some people seem to walk out of the hospital the next day, and feel great, with speedy recovery. I guess that’s why I had high expectations of getting back to normal life quicker. Others, slow but steady. For me it’s been very up and down, all over the place, like a rollercoaster. I’ve had some nerve damage from the fistula that’s taking forever to to fix itself, and am hoping it keeps getting better. And I didn’t even have a very high grade fistula, just one that was going through a bunch of nerves.
After 8 months I’m finally feeling like it was worth getting it treated, especially when I read back on my symptom diary (yes I had to keep one, because I kept forgetting to tell my doc things!).
Thanks Nicole … I guess my expectations have been too high re: recovery … probably because apart from the PT which didn’t bother me (until I was told what it was!) I had no symptoms … so feel much worse this side of the procedure. I’m like Richard too, in that all the weirdness is making it very hard to believe all is okay / I’m actually fixed so I’m hyper aware of and questioning everything that I’m not expecting. What a rollercoaster … but you’ve all given me hope that things will improve.
Still sounds quite similar - it took me quite a while to build back up to where I could workout or walk around the block.
At first, a 5 minute walk would make feel exhausted. Months later, it was post working out - I’d feel just fine, then all the sudden I’d fall asleep - usually for short periods of time.
Almost 5 years later & I’m still not quite sure what causes what. I checked out just fine - but, I get random dizzy spells, or get very fatigued after doing nearly nothing.
I just try my best to follow what my body is ok with.
Thanks for sharing Mike … not enjoying the journey have to admit, but staying positive and keeping moving forwards, just much more slowly!
Just take your time. Having brain surgery through something like a 6mm cut in the groin is a fantastic illustration of modern science and medicine. I feel so blessed that I was able to have my surgery when I know my grandfather had brain haemorrhages as an adult and I don’t think they could even look to see what was going on inside his head, never mind do anything about it. To get it fixed through a tiny cut at the top of my leg is just mind-blowing! Yes, I think that’s a perfectly good word.
However, it tends to lure us into believing that it’s a lot more trivial than it really is. Your brain has been suddenly replumbed and Mike and I and others (but I think especially the DAVF people here) recognise the weirdness, the noises and so on go on a lot longer post op than you’d expect.
I know I’ve said all this already but I obviously like the jaunt of my own typing(!) What I really mean is you have to be a little alert to stuff that might be significant but hopefully you’ll follow a similar course to me. If you can put the smaller stuff out of your mind, believe that you’re fixed and try to put the thing as far behind you as possible, I’m hoping I might lure you into feeling better about it quicker than I did.
I think it’s hard to ignore the noises but if you can, maybe you’ll be pretty much A-OK in a year rather than two. It took me about two.
I think you’re doing great!
Very best wishes,
Richard
That’s well put
Kinda the way I tried dealing with it at 1st. It’s no huge biggie - right back into ER I went
And, other people’s input does not help on this at all. People don’t think much of it, since we don’t have massive scars across our heads.
The other thing I meant to say, and Mike highlights it, is take it slowly. You’re not back to normal for a long time. It’s important to resume normal life but do listen to your body and take it steady.
I drove my mum 100 miles to London and 100 back for a concert three or four months post op. I got through the day but it was definitely pushing it to do all of that. I also think playing badminton with my son overdid it and going back to the gym felt great but I think that led on to me having my dizzy spell in Sep or Oct.
Just be careful. It will take time but I hope you’ll get there quicker than I did.
I’ve asked to be signed off from work again. I’ve decided to start my recovery again … slow it right down and hope I haven’t done myself damage by pushing it. I didn’t think I was, but defo wasn’t listening to my body. I had underestimated it … I think I mentioned I’m quite literal, so when surgeon said you’re fixed I thought right, time to back at it. Thanks all … it’s so great to know your listening. I feel so emotional all the time, but you are helping me process and realise what’s happened is a big deal.
Also, my new saying … I believe!
Sounds good, to be honest. Just carry that being sensible into your home life as well.
I found I was able to work (but I had a desk job). I had three solid weeks off post op before going back. I spent too long a few weeks post op having to sit on uncomfortable stools and look up at a screen one day (maybe only for an hour or two!) and that sent me a bit backwards – back onto some paracetamol – but I think it is mostly about being sensible.
Age yourself 20 years and do stuff that older people can do to start with, try only small amounts of other things and leave it at that. Build up very slowly. Jumping into a game of badminton was definitely too much for me, and the other things I mentioned.
Not having a big zip scar might lead people on to question you a bit but send them to me and Mike! We’ll tell 'em!
Lots of love,
Richard
The heat just started to roll in out here & I just started feeling odd head sensations again.
Not exactly sure how I made it hospital free last summer, summer before I shot myself into ER & was diagnosed with brain swelling - after working 14+ hour night shifts for a week or so
It took about a week for me to recover from that one
Saying, “take it easy” is a lot easier than doing it - especially since I have a insanely physical job
But, yeah - ever since this happened, I’ve been in search of a new normal
But, compared to some - I’m doing great! I work with a few guys that are barely post cancer & they’re still chugging along.
Look after yourself Mike … hoping you manage the heat and the sensations fade x