Tinnitus; whistles and wooshes

It’s been a while, and I would like to thank you all contributors of this group, it helps alot to know you’re not alone.
I am now almost two years post surgery, dAVF borden3 in left occipital area. neurosurgeoun says the dAVF is completely removed. My tinnitus/whooshing has gotten better, but is still severe some days, especially after activity involving higher heart rate (<80% max hr). Is any of you experiencing something like this and how do you cope?
Sincerely
Gro

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@Gro

I don’t feel mine is “too bad”. While I have got rid of the pulsatile tinnitus, I’ve got “regular” tinnitus and I’d say it is more acute than it used to be. However, at this point, I’m better if I ignore it. And I feel I’m lucky I can ignore it.

If I listen to it, it grows and swamps out other noise. So it’s definitely better to ignore and keep my mind busy with other things.

My mum’s dog barked right next to my ear the other day and I’ve got an increase in tinnitus for the moment but I assume that will fade away a bit if I carry on with my strategy.

I assume that you notice it less when you’re busy or when you’ve got other background noise going on. If it bothers you in quiet rooms, one tactic is to introduce some background noise so your brain listens to that rather than the jet engine.

Discussing it with you just now, mine is quite noisy – jet engine whine – and it was exacerbated by the dog but I’m confident that if I put it out of mind, it will only shoulder its way into my day from time to time. Night time is more difficult but again I think that thinking of other things stops your brain from listening for the whine and it fades better than otherwise.

Best wishes,

Richard

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It’s been almost a year & a half since my embolization - I still get it a bit on my left side. Just a bit - I’d say at about 20% of what it was when I first came out of ICU - when I first came out, it was like a constant sea shell stuck to my left ear.

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I have 24/7 normal tinnitus (pretty loud and annoying) that got a little worse after surgery

I can’t tell you how I forget about it. I wish i could. I guess i just got used to it and accepted it’s a part of my body? I don’t know really

To me it’s just like background noise that’s normal now

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It has been about 3.5 years since my DAVF embolization procedure. The tinnitus came back about 6 months after the procedure and got worse over time. The funny part of it is that once the neurosurgeon gave me a script for angiogram, it kind of went away.

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Thanks, yes you are right in the strategy of letting the brain be occupied with other things. I am practicing every day, and manages it better, however, the sounds are so varying to me, a combo of pulsatile and whistles/sizzling/winds blowing around a corner.
Helps to hear that it is possible to learn to cope at least :blush:

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That is interesting, did they fade out before or after performing the angio? Thanks for sharing!

Hi @Gro!

I experience lots of noise in my ear after DAVF-embolization a year ago. My DAVF was partially closed, but is a Borden grade 1.

I got a highpitched constant noise after the procedure, and also a pulsatile bruit that recently got louder again(it was one of my first symptoms).

I also got a type of constant headache, but they don’t really know why or how to fix it. I was referred to neurologist to get medication/painkillers for the headache, but haven’t found anything that really works yet.

As much as I try, I haven’t got used to the sounds in my ear. I try to focus on everything else, but it’s not easy.
Especially at night! And my lack of sleep makes my headache worse, so it’s just a frustrating situation.
I still want everything to be «fixed» so I can go back to normal again.
Do you have any headaches because if the treatment?

My neurosurgeon now wants me to take another angiogram to see what is going on, so I guess I’m gonna do it. My hope is that they will see something that can be fixed(fingers crossed).

By the way, are you from Norway?
I am a patient at Rikshospitalet in Oslo:-)

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