Cured Whoosher: Dural AV Fistula of the Transverse Sigmoid Sinus
How about some good news: another Cured Whoosher story, from one of our own. This one is from a woman in the UK.
I will call her "Jackie." Jackie, thanks for sharing your story and enjoy the silence! Her story proves yet
again that in pulsatile tinnitus cases, things get missed on films very often -even by the best doctors- and that we have
to keep advocating for answers and care. For links to this and many other cured whoosher stories, click on our Cured Whooshers page.
Dear Whooshers,
I
am a cured whoosher and I would like to share with you my story.
I awoke one morning to
the sound of my heartbeat in my left ear. "Oh" I thought, "this is weird." It carried on all day,
loud, and then the headache arrived.
That night I doped myself up with pain killer
but could not get to sleep as this noise in my ear was unrelenting. A few days passed, still the same, whoosh in my ears and
pain in my head so I made an appointment to see the doctor. The doctor examined my ear and could not see anything unusual
so sent me away with a steroid nasal spray, antibiotics and strong pain killers.
One week
later, there was no change in my condition so I went back to see the doctor. After a few trips back and forth, the doctor
referred me to an ENT specialist but said there would be at least a three-month wait. This news hit me like a brick as I was
in so much pain with my headaches. I was reduced to tears. At this point I decide to pay and go private.
Whilst
waiting to see the specialist I went to the local A&E department as the pain in my head was unbearable, all they came
up with was to go and calm down and have a massage!?!
Anyway, I was fearing for my sanity so I said to my husband
“this is so loud, can’t you hear it?” He put his ear to just below mine and I saw his face drop. He could
hear it. I phoned my mum and put the phone to the spot behind my ear and she could hear it over the phone.
When
the time came to see the specialist he did a nasoscopy and a hearing test, all was fine but he could also hear the noise through
a stethoscope. As I could not afford to carry on the investigation privately I went back on the NHS and was sent for
an MRI scan. The results of the scan didn’t show up much and was then referred to a wonderful man at Addenbrookes Hospital.
I was sent for a CT scan and angiogram.
After five minutes of having my angiogram
I had a diagnosis and a plan of action. I had a dural av fistula of the left transverse sigmoid sinus. They could put in a
stent and block it off with some sort of glue! I wasn’t making it up! It wasn’t al in my head! It had a name and
they could fix it.
I had the operation which didn’t go quite to plan (they ended up
putting another couple of stents in somewhere as my tubes were very narrow and I had mild intercranial hypertension as well)
but awoke to the sound of sweet silence.
That was six months ago; I still have a few weird
head-achy pains but no whooshing. It took me about a year to get it fixed from the first symptoms to the operation which isn’t
too bad compared to some of the stories I have read on your site but you have to fight and hard.
Love
your website, It gave me hope when I needed it and hope it continues to give people the strength to do the same. Never give
in x
For more information about dural av fistulas see neuroangio.org and the other cured whoosher stories about this cause here, here, and here.
Cured Whoosher: Transverse Sinus Stenosis ON BBC RADIO UK
One of our own Whooshers was recently cured and shared his story with BBC Radio. The clip begins at 10 minutes, 24 seconds into the show and concludes at 21 minutes, 37 seconds.
CLICK
HERE TO LISTEN! This link has expired. We hope to get a working link to the radio spot soon.
The interviewer starts by introducing the symptom as "chronic tinnitus," but Ian does a great
job explaining that his symptom is not tinnitus at all. It's pulsatile tinnitus.
Additional coverage of Ian's story can be found in the articles below.
My only gripes are that
the writers (with the exception of the last one) completely confuse tinnitus and pulsatile tinnitus -it would be more accurate
to use the word "pulsatile" in the titles of the articles. AND they wrongly refer to pulsatile tinnitus as a condition
when it is a symptom, not a condition. These are more than misguided mistakes; these errors provide false hope to sufferers
of regular tinnitus, for which there is no cure, and they confuse the smaller pulsatile tinnitus community with the larger,
much more common one, which is a substantial difficulty we pulsatile tinnitus sufferers face to get proper attention, evaluation
and treatment.
Nevertheless, this is very nice exposure for pulsatile tinnitus and Ian did a great job conveying his
experience. I am proud of him. His story is yet another courageous and wonderful example of a pulsatile tinnitus patient
who wouldn't and didn't give up.
For more information on Venous Sinuses, see this link on neuroangio.org.
To read another "Cured Whoosher" story about transverse sinus stenosis, click here.
More Cured Whoosher stories, on a variety of underlying causes, including medical reports and abstracts, can be reviewed
on the Cured Whooshers page.
NOTE: Coincidentally, an interesting medical report was just posted to support stenting the transverse sinus
stenosis to remedy pulsatile tinnitus after noting that other treatment was unsuccessful. The report links transverse sinus
stenosis with some cases of intracranial hypertension, also known as pseudotumor cerebri (although that name is a bit outdated).
It reports successful treatment to cure all pulsatile tinnitus sufferers in the study who experienced unilateral
(one-sided) pulsatile tinnitus.
The writers should have stressed and indicated *pulsatile* tinnitus, not tinnitus,
since their synopsis clearly states, "Eleven patients reported subjective pulsatile tinnitus."
Reviewed by Zalman S. Agus, MD; Emeritus Professor, Perelman School of Medicine at the University of Pennsylvania and Dorothy Caputo, MA, BSN, RN, Nurse
Planner.
Another Inspirational Cured Whoosher! Dural Arteriovenous Fistula (DAVF)
This is a Cured Whoosher story from "AC," a woman in the UK. After a long struggle seeing doctors who told
her she had "tinnitus" and "live with it," AC found a doctor who knew better, and she found answers.
She also found a cure. Her diagnosis: dural arteriovenous fistula (DAVF). You can read more about DAVF on neuroangio.org.
It all started in March 2010 with a noise in my left ear a
bit like the type you get with a cold; blocked nose etc. After two weeks, when it hadn't gone, I thought I may need my ears
syringed. I was told they were fine and was given a nose spray. It didn't go and was more persistent; it seemed to have a
rhythm as if I could hear my heart beat. It wasn't too bad when there was other noise going on but when there was silence
it was very annoying and, yes, it sort of whooshed. It was starting to disturb my sleep.
Eventually my GP sent
me to ENT. Here in the UK you have wait for a number of weeks to see someone. I was a little stressed by the time I got there.
The week before my appointment I was reading in bed and placed my head in the crook of my arm for more support. My clenched
hand was pushing into my head just behind my ear. I realized that the noise had stopped. I removed my hand and it started,
so put it back and it stopped again. I devised a method of trying to sleep with a small stuffed toy wedged behind my head
to stop the noise. Fine until you moved and it fell away. By then though, any port in a storm. I saw the ENT man who was the
most arrogant it has ever been my misfortune to meet. He was very rude and didn't really want to listen to what I had to say.
He insisted I had Tinnitus, nothing more. I told him I got a whooshing sound like my heart beat, not ringing or whistles,
and when I told him how pressing the back of my head made it stop, he looked at me as if I'd sworn at him. He eventually looked
in my ear, told he couldn't find anything and to go away and get used to the fact that I had Tinnitus.
Things
went from bad to worse, the noise got louder at times and at times I would say I could feel it. Then I started to hear a squeak.
Not often, but it was there. Sleep became harder, my little toy never stayed there all night. After a few weeks and seeing
different GPs, one sympathetic locum sent me to the larger hospital for a second opinion. I was ready to throw myself out
the bedroom window by then. They couldn't have been more different. They listened, looked in my ear with a special microscope
and arranged an MRI and MRA scan. The registrar also arranged for me to go to the Tinnitus Clinic.
A woman named
Megan saved my life. I was told there was nothing found on the scans. In the meantime Megan recommended a sound machine to
put under my pillow at night to help disguise the whooshing. She saw me every few months for a year to help keep me sane.
The machine helped a little but by then I was feeling a pulsing sensation behind my ear and it was squeaking more. The noise
would get louder then soften and at times it seemed to pop; all around the ear area felt strange at times. When it was very
bad it made me nauseous. Megan suggested I go back to ENT and the GP got me an appointment; this time with the main consultant.
He was very kind and said the scan came back clear and that it could be a trapped capillary. He listened with a stethoscope
behind my ear and sent me on my way.
That was March 2011, a year after it all began. In June, I get letter to
say they wanted to see me at ENT about my symptoms; as I was to wait a month I thought it was just routine. It wasn't. It
seems they had taken another look at my scans after my previous visit and found a malfunction in the skull behind the ear!!!
He wanted me to go to a Neurosurgeon at another hospital. My feet didn't hit the ground then. Within two weeks the Neurosurgeon
was on the phone to me to talk about what they thought had been found and made arrangements for a cerebral angiogram. That
showed I had a small av fistula of the dura. At last!!!!! I was told all the banging, whooshing, pulsing and even the squeaking
was consistent with what had been found. It was suggested I have treatment called ONYX; a surgical glue that is injected into
the blood vessels in that area that would seal the malfunction and hopefully stop all the symptoms. It was done in the same
way as the cerebral angiogram, only this time I was given an anaesthetic. Here I am over a year later with no noise or pulsing.
It was hard work getting heard and believed.
One of the things Megan said I might want to do was join the
British Tinnitus Association as although Pulsatile Tinnitus appears different to Tinnitus in lots of ways, there may be something
they have that may help. Well, it did, as my first magazine from them had an article about the Whooshers.com site by Emma. I logged in and knew I'd found the right place and help. Without this site I don't think I would have found the strength
or knowledge to get the answer and the help I needed. I hope my story will encourage anyone else not to give up and to find
the answer to their whooshing and eventually a cure.
I would like to say a big thank you as your site helped me
find the cause and a cure for my PT. It was hard work to get listened to by the medical profession, one ENT doctor treated
me with contempt. I was sent, for a second opinion at another hospital, only to be told at first there was nothing on the
MRI or MRA. Another look at them six months later found I had a small DAVF. Once found it was quickly dealt with. I had the
ONYX treatment and a year on still have no noise. It's been heaven. I have to say the third hospital where I was sent to have
the treatment done was wonderful. Everyone was very kind and thoughtful and very understanding of my PT. I was told all my
symptoms were consistent with what was found. One in the eye to the first ENT man.
Your site helped me not
to give up.
Many Thanks,
AC from the UK
Read more Cured Whooshers stories
along with medical report abstracts on the Cured Whooshers page.
What if you could make a video that would replicate your whoosh? A video that would let doctors "see" the pulsing,
in real time?
A recent New York Times article titled, "Scientists Uncover Invisible Motion in Video," explores exactly that: making visual what is otherwise not. The video below goes along with the article.
Cool, right? The team of folks at MIT developed a way to record the movements
inside our bodies that are invisible to the naked eye, using color and a computer program that detects and records the tiniest
motions.
As a whoosher, the notion that this is a method to record "when the blood goes where" is intriguing,
since pulsatile tinnitus is often a result of turbulent blood flow. Did you see the pulsing colors of the man's heartbeat
in the video?
We know not all whooshes are the same. That is evident from the collection of whoosher-submitted
pulsatile tinnitus sounds on our Sounds page. I've often wondered, do all whooshes caused by a particular cause have similar characteristics?
I wonder,
if a sample of whooshers were "VideoScoped," with this program described in the article, would a visual distinction
be available to help determine the cause of one's pulsatile tinnitus? If some of us with a diagnosis could be recorded, would
our "whooshes" look different from those with other diagnoses? Would it have similarities with other whooshers'
whooshes with the same cause? Could this be a method to help diagnose patients with otherwise invisible symptoms?
Would
you like to record your whoosh and give it a shot? Here is the link with more info about how to record and upload your video. I'm really excited to try it. It works with any video... so what
you'd do is record your ear or head, I guess. The place where you perceive the whooshing. People with a lot of hair may find
this tricky... my whoosh can be heard with a stethoscope to the back of the head, so I wonder if my hairdo will not make it
possible to record a decent video. All you bald whooshers out there listen up! You have no excuse not to try this. Also, some
of you may have a pulsatile tinnitus cause that can be detected via the eye. Why not try recording your eye, as is shown
in the video? I wonder if you'd be able to see pulsing movement that way, too.
Did I say the link to try
it out is FREE?
If you do upload a video and you see something neat, please send me your thoughts and
clips to whooshers@gmail.com! I'd love to hear from you.
