Venous Sinus Stenosis and Pulsatile Tinnitus

Hi. I had 10mm big aneurysm in my sigmoid sinus. I was not diagnosed and struggled for 10 long years. I got twi stents in my right transverse sinus and three big coils in aneurysm.
Wish you the best.Prayers

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@Sadia

Your venous diverticulum and pulsatile tinnitus sound rather like a dural arteriovenous fistula. I’m glad to know your pulsatile tinnitus is fixed because that is very noisy and worrying! Well done!

Richard

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Itvwas venous sinus stenosis and diverticulum.
PT was terrible.I lost the meaning of silence. My quality of life was suffering badly. No answers,no diagnosis,no body was able to understand in my country.A hard journey .But at the end I regained my silence back.:pray: :pray: :blue_heart: 🩵 :blue_heart:

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Fascinating!

I’m intrigued: how would you describe the pulsatile tinnitus?

It started 10 years ago when I started listening some sound in my right ear.It was deep down and off and on.I feel it rarely in first few years.Than from 2019 it was constant.Its intensity has increased with time. Alongwith that sound from right ear I feel pain in my right shoulder,neck pains,brain fog,lithargy,memory issues,speech issues like wrong words and short term memory loss etc. I go to ENTs for years ,have scans ,hearing tests all clear. In 2022 this sound was horrible and 24/7. I myself diagnosed that when I press on my neck on my SCM muscle …the sound completely stops.At that time I came to know its PT and synchronised with my heart beat.Than I found Whooshers group on FB and my journey on right path starts from there.I send my scans to an INR (Interventional neuroradiologist).The great Doctor Athos Patsalides in NY…He diagnosed me and did my surgery.He is my healing angel. I learned one more thing that you are the best advocate for urself" .So keep going to get answers even when no body understands u and ur sufferings. It is a rare disorder and we all face same scenarios more or less.

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Fascinating! (And helpful!)

I self-diagnosed with a dural arteriovenous fistula as a result of the pulsatile tinnitus I could hear in 2015/16 and an article I found on the American Stroke Association website. In about October 2015, I could hear a very faint whoosh, whoosh sound and while I was visiting my doctor for something else, asked him if I had a lot of wax in my ears – would that be a cause for hearing the internal noises that otherwise I might not hear? He looked in my ears and declared that there was a bit of wax but not something he’d do anything about.

By January 2016, it was louder and I did a bit of googling. I may have found the whooshers website at that point but it was mostly talking about tinnitus and people not getting traction with their doctor. I may have only found whooshers later, in perhaps July.

By April 2016, I decided it was definitely louder and I found the American Stroke Association webpage that talks about pulsatile tinnitus, arteriovenous malformations, dural arteriovenous fistulae, bruit and stroke and frightened myself stupid, so I went to see the GP.

I described the noise – I could hear a whoosh, whoosh in each ear, once a second, in time with my heartbeat – and she sent me to an ENT.

I saw the ENT at the end of August 2016. My GP had clearly referred me for tinnitus, so he had me do all sorts of hearing tests and then eventually said, “So Mr D, how long have you had tinnitus for?”

And I said, “Oh, I’ve had tinnitus for decades! I don’t care about the tinnitus, it’s the pulsatile tinnitus I’m bothered about!”

Pulsatile tinnitus?!”

“Yes!”

And he went to find a stethoscope. He plotted all over my head with the stethoscope, pausing over my right transverse sinus, and just listened for quite some time. It was clear he had found something.

He made a phone call to a colleague, who didn’t answer, paced up and down and then said “Well, you’re my last patient of the day but my most interesting patient of the day.”

I said, “I’m not sure I want to be your most interesting patient of the day!”

“You have what we call an arteriovenous malformation and I’m going to send you for an urgent MRI.”

It took two months to get the MRI and then get the report read by the consultant. He then referred me to neurosurgery in a different city and I had a PHIL glue catheter embolization procedure the following April. The conclusion was that it was a dural arteriovenous fistula in the right occiput, with the artery feeding very directly into my right transverse sinus.

Over the months from September 2016 to April 2017, it got noticeably worse. I got dizzy, I got louder and louder pulsatile tinnitus – it was like having the washing machine on pump out all night – and lying down made the world spin rather as the reverse flow of blood through all sorts of places of my veins and sinuses on the back of my head got the blood going in and out like waves on a beach. Very unpleasant.

The consultant interventional radiologist said he glued up the fistula, filled the draining veins and found a diminution of my right transverse sinus which he “opened out again” in some way. I don’t think I’ve a stent fitted but maybe that’s what he did.

Fascinating (but perfectly frightening).

How similar in sound was your pulsatile tinnitus? I think it may be helpful for people to be able to distinguish these things, if, indeed, they are distinguishable.

Very best wishes,

Richard
p.s. I’ve moved our tangent into a separate conversation.

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Happy for you. :blue_heart:
The sound I hear was always same, The only difference was in loudness which varies with time. It was like the sound which will u hear when during drive car window is open and u listen the sound of air…like sha,sha…perfectly Synchronised with heart beat. Constant.

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Ok, interesting. Very much the turbulence in air as you describe it equal to the turbulence in the blood due to that stenosis.

Mine was definitely more like the washing machine pumping out the water!

Really good to know. Thank you.

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Hi , how did they treat u , I have similar, pulsating noise on and off, I have a 4mm mca x

Hi @mason2024

Mine was diagnosed as a dural arteriovenous fistula, a type of AVM, where an artery has connected directly to a vein and is pumping arterial pressure blood into the vein. That it then passes by my ear(s) meant I could hear it.

It was fixed in my case by a PHIL glue catheter embolization procedure – basically the join was filled with glue. The pulsatile tinnitus went away but I felt I could then hear a very loud ordinary pulse. I’ve ignored that and that has faded back into the background again.

If you’ve got a pulsatile tinnitus, I’d say it is worth investigating.

Richard

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It’s not all the time , app it’s tinitus x