Pulsatile Tinnitus from AVF

[Amber1]

I have had pulsatile tinnitus since 2011 but until about 9 months ago it was only in one ear and very mild.

Over the last 9 months it is on both sides and getting louder with more flow on the MRI ASL sequence. I have an AVF in the head but not the brain.

I wanted to know

1) Do most people have the sound in one or both ears?

2)Do most people have a constant sound or variable sound? (mine is highly variable from occasionally absent to quiet to very loud all within one minute, it can be high pitched or vibratory or grinding).

3) for what % of time is your sound present vs absent?

4) Does anyone have a low risk dAVF or low risk AVF and how long have they been following it and what has been happening?

5) Is anyone following it via ASL sequence?

Thanks for your input.

 

[Karen]

Hi,@Amber1,

I have pulsatile tinnitus, but not a DAVF, so I can at least get the ball rolling and answer some of your questions.

1) My pulsating tinnitus is in one ear only (right ear). I also have regular tinnitus in the same ear.
2) I have a constant sound. My pulsating is about the same all the time, unless something sets it off and causes it to get stronger. I also have a constant hissing sound in the same ear.
3) My pulsating sound is present 100% of the time.
4) I don't have a DAVF.
5) No.

I will be interested to hear from other pulsatile tinnitus sufferers and what theirs is like.

Thanks for asking these questions, Amber1!

Best wishes,
Karen

 

[Cathrine]

Hello Amber and all "pulsatiles", I haven't postet here for some time, because my TP war much better. Not gone, but I didn' hear it very loudly an got used to it. But 6 weeks ago a had another - not very spectacular - whiplash injury. One day later the whooshing started again and hasn't stopped so far. Last week a I went to see a doctor again. He did a doppler sonographie (is that the right English word?) and actually found 2 small AV-Fistulas. One on the right side, near the back of the "glandula submandaburlaris, the other on the left in the area of "arteria pharyngea ascendens". I wonder why they didn't see this 3 years before! Maybe their detecting instruments are better today. Or the fistulas are new. (But the the sound is exactly the sound 3 years ago.)
An now I would like to answer your questions:

1. Yes, I have the sound on both ears now , sometimes one side is louder than the other.
2. It is fluctuating like yours, the only difference: the sound ist alway a very high pitched whooshing. But there also is an high constant tone on the right. I think this could be a "real" tinnitus.
3. More or less 100% . Never silence!
4. I have no idea what to do now. The "doppler-doc" of course suggested an invasive DSA. I think I am going to do it.
5. As mentioned: Three years ago they did not see anything on MRA. So .... turn to point 4

Dear Amber, though this situation is hard and a torture, it is good to contact Co-sufferers.
Please let me know what you are going to do now.

Best wishes to all of you from Germany
Cathrine

 

[Scared111]

Hello Amber and all "pulsatiles", I haven't postet here for some time, because my TP war much better. Not gone, but I didn' hear it very loudly an got used to it. But 6 weeks ago a had another - not very spectacular - whiplash injury. One day later the whooshing started again and hasn't stopped so far. Last week a I went to see a doctor again. He did a doppler sonographie (is that the right English word?) and actually found 2 small AV-Fistulas. One on the right side, near the back of the "glandula submandaburlaris, the other on the left in the area of "arteria pharyngea ascendens". I wonder why they didn't see this 3 years before! Maybe their detecting instruments are better today. Or the fistulas are new. (But the the sound is exactly the sound 3 years ago.)
An now I would like to answer your questions:

1. Yes, I have the sound on both ears now , sometimes one side is louder than the other.
2. It is fluctuating like yours, the only difference: the sound ist alway a very high pitched whooshing. But there also is an high constant tone on the right. I think this could be a "real" tinnitus.
3. More or less 100% . Never silence!
4. I have no idea what to do now. The "doppler-doc" of course suggested an invasive DSA. I think I am going to do it.
5. As mentioned: Three years ago they did not see anything on MRA. So .... turn to point 4

Dear Amber, though this situation is hard and a torture, it is good to contact Co-sufferers.
Please let me know what you are going to do now.

Best wishes to all of you from Germany
Cathrine

what's a dsa ? i have a higher sounding one too. are u able to stop the sound in anyway? i also had a whiplash and started after three weeks but they never did a doppler? wouldn't mri and mra be more accurate? thanks . i hope ur procedure goes well

 

[Cathrine]

<hi scared111, the DSA is an invasive test, where they go with an endoscope through the arteries in order to confirm the location of the fistulae (which they had detected before by doppler). It is risky and I am afraid, of course. Anyhow, you should insist on a doppler testing - especially after a whiplash trauma. It is not dangerous, rapidly done und cheap. And they can - usually - exclude any potentially dangerous changes and barriers in the blood circulation. If it turns out to be not clear, like in my case, further testing will start again.
I would advise everyone to insist on a second and third doppler, as it seems to depend on the instruments and on the doctor. - As you know, it was my third test, when they suddenly detected TWO fistulae.
I am not sure what is coming up for me now, but I will inform you.
Best wishes

 

[Scared111]

<hi scared111, the DSA is an invasive test, where they go with an endoscope through the arteries in order to confirm the location of the fistulae (which they had detected before by doppler). It is risky and I am afraid, of course. Anyhow, you should insist on a doppler testing - especially after a whiplash trauma. It is not dangerous, rapidly done und cheap. And they can - usually - exclude any potentially dangerous changes and barriers in the blood circulation. If it turns out to be not clear, like in my case, further testing will start again.
I would advise everyone to insist on a second and third doppler, as it seems to depend on the instruments and on the doctor. - As you know, it was my third test, when they suddenly detected TWO fistulae.
I am not sure what is coming up for me now, but I will inform you.
Best wishes

you did the doppler test 3 times before they found it? i have the same thing as you. a constant tonal sound on the other side of the ear 4 months after the pt started. i don't know why i would get real tinnitus on one side. no exposure to anything. did u get it at the same time? anything you press on ur neck stop the pusatile sound?

 

[Cathrine]

Yes, they did it twice before they found it! Maybe the fistulae had been too small before. I can interrupt the pulsstions (a little bit) when I lift my head with both hands. Don't no why. But I cannot influence the regular tinnitus doing that. Another way to soften the pulsating is: standing upright and let the head hanging down drawing the shoulders back/down. I really spend hours standing upright - which is exhausting. Yesterday the pulsations where milder. But today is going on as always. Real torture. The problem is going on with 'normal life' . Work, family, friends. It's a nightmare. But nevertheless I have hope: It had not bothered me too much for a long time, before the new whiplash . And they thing to have found a cause for it. I hope and pray for everyone here that we will at least get rid of PT. - even if the regular T stays at (my) moderate volume.