Another Diagnosed Whoosher: Carotid Cavernous Fistula (CCF)
This report, about a 37-year old man with pulsatile tinnitus, explores some of the pitfalls of evaluating our symptom.
Lucky for this patient, after a number of tests that returned "normal" results, doctors continued the evaluation
and found that he had a carotid cavernous fistula.
From Cedar Sinai, a carotid cavernous fistula is an abnormal
connection between one of the two carotid arteries and the veins just behind the eye.
We don't really know from the
article how this patient fared after the diagnosis, but the report describes the complexities often encountered when evaluating
our cases. He'd been experiencing pulsatile tinnitus and vision issues for two years, saw a number of different specialists and
endured multiple diagnostic tests that came back "normal" (sound familiar?).
The article reinforces
that many causes, like CCF, require the expertise of mulitple specialists. The report ends by telling us the patient's case
was sent back to a neuro-opthalmologist.
*The patient's pulsatile tinnitus, which he experienced
for two years, did not change with head or neck manipulations.
Another Cured Whoosher! The Unlikely Cause: A Grommet
Over the years we've
heard from a handful of Whooshers who reported experiencing pulsatile tinnitus right after or soon after having a grommet inserted.
The insertion of a grommet,
also called a tympanostomy tube, is a common procedure for children with persistent ear infections, but many adults get them as well.
Here is a story from a Whoosher
(she prefers to remain anonymous, and we respect her wishes) who recently reported that her pulsatile tinnitus was a direct
result of a grommet, despite the doctors believing that could be the cause. She didn't experience pulsatile tinnitus before
the procedure, but began experiencing it soon after. Though she met resistance, she persisted and she was cured when
the grommet was removed.
Thanks for sharing your story! We'll be adding it to the Cured Whooshers page.
I want to let others with pulsatile tinnitus know about how my PT stopped. I had a tube (grommet) placed in my
right ear due to an infection in May 2017. The pulsatile tinnitus began intermittently in the fall, and became much worse
by April 2018. By fall of 2018 it was almost without stop. I had a full diagnostic work up and no cause was found. A friend
who is involved in sound production suggested it might be related to the ear tube. All of my doctors told me that was not
possible. The ear tube didn’t come out on its own, though it did migrate.
I had it removed in outpatient
surgery on January 24, 2019. My pulsatile tinnitus stopped when it was removed. I read online about another woman with the
same experience i.e with PT while an ear tube was in place, relieved when it was removed. I just want to be sure that this
possibility is on the radar for others suffering from this disorder. I got my life back from that simple procedure.
February 10, 2019: It’ll be two weeks tomorrow since the tube (grommet) was removed and
NO pulsatile tinnitus!!! I had one episode where noises sounded very loud that lasted for a few hours. Very scary, but then
it stopped. Based on another’s experience, some strange sounds aren’t unusual after the grommet is removed.
Thank you. Whooshers was a great resource and comfort to me while I was going through this.
Be Your Best Advocate! Another Diagnosed Whoosher Shares Her Story.
We here at Whooshers.com have been busy as ever (hence the rather long period between posts here). Emails continue to pour in, many from patients
who are new to pulsatile tinnitus and need guidance. We routinely receive success stories as well, from patients who
find a diagnosis and treatment. We haven’t been sharing enough of these stories, which are so important to share as
they encourage members of our community to be our best advocates!
Below is just one, from a patient in London whom
we will call “Laura.”
Laura, good for your for being your best advocate. Please keep us posted on your progress!
Thank you for setting up your amazing site! I first noticed a whooshing sound in my left ear around Christmas time
and thought we had a faulty central heating radiator. Then I realised it was me! I saw a doctor who gave me a sinus decongestant,
but I knew something was wrong with my ear so I went back again and asked to be referred to an ENT. He did hearing tests and
told me it was likely to be Eustachian tube dysfunction, as I fly quite a lot internationally with work.
After a week and the noise driving me mad, I went back again to the ENT and he referred me for an MRA.
I was diagnosed last week with a DAVF (Dural Arteriovenous Fistula) in my sigmoid sinus. I saw a Neurosurgeon
this week and he has now involved a Neuroradiologist.
I have an angiogram booked on 1 March to assess the DAVF and decide
Your website has been a life saver. When I searched DAVF on the Internet I was just stuck
with lots of complicated medical articles written for other medics. I felt so relieved when I found Whooshers.com and saw others have the same condition.
Thank you again, and I’m keeping my fingers
crossed I can have my DAVF treated and eliminate my PT! I’m based in London and although DAVFs seem quite rare I’m
hoping it can be resolved by someone here!
Another Cured Whoosher! Brain Arteriovenous Malformation (AVM)
for stories like this one.
Real experiences from real people who have had a journey - usually a complicated one - with pulsatile tinnitus,
but have ended up with a diagnosis, treatment and silence. Each experience is a reminder of the complexity of a relatively
rare symptom - pulsatile tinnitus - and the need for patients to be their best advocates.
Chuck, thank you for sharing your
story. I sure am thankful that this site helped you. Enjoy the silence!
It all started in Jan 2018 when I got up
in the middle of the night and heard a faint noise. The noise was very faint
at first, a low volume of the whoosh, whoosh. It was a couple of months before it started getting louder. Eventually, I heard
it all the time.
The next day I heard it at work and realized
the noise was coming from me. So, I started with my primary care doctor who thought I just had some fluid on my ears and prescribed
treatment for that. Of course the noise did not go away and a couple more trips back before we thought that I should see an
ENT. He seemed concerned but also had no idea what it could be. Gave me the usual hearing tests before deciding to send me
for an MRI.
You guys who are going through this are well aware of the time lapses between appointments,
tests, and the uncertainty of just what is going on here.
The MRI came back with everything looking
"normal" and a general feeling from my primary care and the ENT of I am not sure what the next step is. I did some
web searching myself when I ran across Whooshers.com. Hey, this sounds just like what I am going through. I read all the stories
and particularly the ones of successful healings on the Cured Whooshers page.
I went back to my primary with the website pulled up on my phone telling her we
need to take this up to the next level. I am no medical person myself but from what I read a neurologist was the next step.
He said that he had heard of this before and there was really nothing I could do about it but ordered a CTA with contrast
anyway. CTA came back normal and the neurologist was ready to recommend that I just live with it.
wasn't though because to me the constant whoosh whoosh was very annoying and getting louder I thought. I showed him the website
and talked of a neurointerventional radiologist. I had also read about circulating your test results and he agreed to do that.
He sent them to a neurological surgeon in Louisville, KY who looked them over and found nothing himself.
We were at this 9 months now and to tell you the truth I felt fine physically. Nothing really wrong
with me except this constant noise in my head. Maybe I could live with it. But as I kept going back to this website
I kept finding new things to try. I read where a doctor put the stethoscope to a patients head and heard the noise and that
others recommended not to stop and that a cerebral angiogram with contrast is the gold standard of testing.
So, with a renewed purpose I made an appointment with a second ENT and asked him to listen with his
stethoscope. He did and he heard the noise himself. What a relief, I am not crazy after all.
this new evidence I was sent to the neurosurgeon who also heard the noise and set me up for the angiogram where he found the
arteriovenous malformation (AVM).
It is important to stop here and say do not quit
on this. I know there are many causes of pulsatile tinnitus and some cannot be ignored. That was my case. The neurosurgeon
said mine was a stroke waiting to happen. If I decided to just live with it it may have not been long to live with it. Dr.
Jonathan Hodes of Baptist Health in Louisville, KY is the man who got me fixed. First
doctors I went to were concerned but unsure of the direction to go in.
I got off Whooshers.com was used to help the doctors go in the right way. Thank you for starting
this site. You have helped a lot of us fellow whooshers. I encourage you all who are still suffering to not give
up but keep trying. My prayers are with you.
is a symptom. There are many possible causes of pulsatile tinnitus. For more info on this and other causes see the Cured Whooshers page where you'll find links to medical reports and more personal stories.