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AVM Survivors Network

Pulsation tinnitus

Hello everyone!
Lately, I’ve been hearing a heartbeat in my ears. it’s sort of called pulsatile tinnitus. I’m worried because it’s been 2 years 2 months since gamma knife. I haven’t had any symptoms of this type before.
Has anyone had a similar experience? Is it dangerous?
Thanks a lot for answers.

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@Sona

Hi. It’s good to hear from you.

I had pulsatile tinnitus as the first sign of my AVM but since having my embolization treatment, I have had a pulse that I can hear that is a more normal pulse (and I think isn’t pulsatile tinnitus).

I think it is something to discuss with your doctor, if you haven’t already.

My initial pulsatile tinnitus was a whooshing sound, like “bush, bush, bush” every heartbeat. It definitely sounded like a liquid squirting through a gap that it should not. I went to see an ear, noise and throat specialist and he diagnosed both pulsatile tinnitus, the “bruit” (or noise) that he could hear from outside my head with his stethoscope, and that I had an AVM. It is fair to say my AVM was very near the surface – it was pumping blood into my transverse sinus, which is one of the largest veins at the back of your head, and is very shallow inside the skull.

After I had my embolisation operation to close off my AVM, I could still hear a very loud pulse, so much so that I was sure that my operation had not been a success. However, scans to look for a problem showed that my AVM was fine and I believe that the pulse I could hear after my operation was simply a proper pulse that anyone might hear. It was not the “bush, bush, bush” noise of the bruit but a normal thump-thump, thump-thump, thump-thump of a healthy heartbeat.

So… if you can definitely hear a whooshing sound rather than the double-thump of a normal heartbeat, I’d say you need to talk to your doctor. If you can hear a more normal heartbeat, it may be that your gamma knife is working and you are becoming conscious of a normal heartbeat sound where previously you’ve had low pressure. I don’t know.

So… consider taking to your doctor about what you can hear.

I do think that a whooshing sound is indicative of a risk that needs looking at. I also think that as brain AVM people we listen to the sounds inside our head with a worry that others don’t have, so it could just be that you are a bit oversensitive to a normal pulse.

Does this help?

Very best wishes for 2020!

Richard

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Hello @Sona I agree with Richard that what you are describing should be discussed with your doctor- When I started to hear what you are describing my DAVF was forming and then the whooshing became constant as it grew.
hugs Angela

I have had variations on that noise going on in both ears for approximately 9 years. Currently my left ear sounds like variations on a dentist drill. The right ear is that pulse sound. It’s not a clear sounding “thump thump thump” it is kind of half way inbetween. The doctors, the ENT docs, the neuro docs have all basically said the same thing - it’s from your AVM, it’s not hurting anything, and the risks of doing something far outweigh the potential benefits. In other words, suck it up and live with it.

My last surgery (24 months ago) made the left side way worse and didn’t change the right side hardly at all.

At least in my experience, the care and treatment of an AVM is basically a risk vs. reward scenario.

Hope you find this helpful, interesting or something. As always, let me know if I can help further.

TJ

This noise complaint was my main symptom when my high flow cerebellum AVM was diagnosed. Get it checked out just to be safe.

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I had it a lot and that’s one of the reasons my neurologist did an MRI in the first place, and found my AVM, I still get it.

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Yes, you’ve been very helpful. Thank you very much. Would it be too much if I asked you a few questions?
Before surgery, did you hear that sound all the time? (not normal sound)
I wish you a speedy recovery.

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Sona,

Of course. Yes, before surgery, it was loud and getting louder but was not my only symptom. For some people I think it can be the only symptom. I also managed to record the sound. I’ll see if I can find that recording.

My story here:

I’m fine today. I can hear a pulse in my pillow at night but it is a more normal pulse. I can’t hear it in the daytime.

Very best wishes,

Richard

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Here is my recording…

Recorded by pressing my smart phone microphone to the back of my head! Clearly it was quite near the surface. I also think it possible that it was playing the noise of flow in veins outside my skull, as I had external “reflux” flow going on.

To play this on my new phone, it seems I need to select the three buttons on the right, download it, open it and again select the three buttons (top, right) to choose the player to play the sound.

Hope this helps

Richard

Hi yes this was also my main symptom in investigating and then diagnosing my avm. Like others, I had a loud whooshing sound in my ear that they thought was pulsatile tinnitus but after mri was revealed to be a large avm. I had 3 embolisations and a craniotomy to remove it. Then the whooshing noise did stop but occasionally now, ten years later, I still hear a slight pulse sound in my ear and it freaks me out. It’s not the loud whooshing sound though. I hope you can get yours looked at by your drs soon and it all works out. X

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