is TRULY a fantastic development. So many of us have been assigned a "tinnitus" diagnosis code, when what
we experience is not tinnitus at all. Pulsatile tinnitus is not tinnitus. This is an important, validating
change, and, in some cases, it will be a life-saving change to the way our cases are documented. With a distinguishable code,
more medical professionals will research OUR symptom, recognize the complexities unique to OUR cases, and know better than
to tell us to "live with it" before ordering a thorough and appropriate medical evaluation.
keeping track, the codes are within Chapter 8 - Diseases of the ear and mastoid process. We know that the underlying
causes of pulsatile tinnitus go beyond diseases of the ear, and, in fact, most causes do not have anything to do with the
ear. However, I still think this is a positive development that will go to great strides to distinguish our cases from
regular tinnitus cases, resulting in quicker and more appropriate evaluation.
Hooray for Whooshers everywhere! Make
sure your doctors are aware of the new PULSATILE TINNITUS DIAGNOSIS CODES!
A story recently published by The Columbus Dispatch out of Columbus, Ohio, highlights a diagnosis and attempted treatment for pulsatile tinnitus. Unfortunately, the treatment
was not successful, however the story accurately identifies her symptom as *pulsatile* tinnitus and describes the frustrating
and, sadly, common quest many of us experience to achieve a diagnosis.
Her diagnosis, dural arteriovenous
fistula (DAVF) is one we have seen before. It is an underlying cause that can be dangerous if left untreated. According
to Johns Hopkins Medicine, DAVF is "an abnormal connection of vessels in the tissues around the brain or spinal cord in which one or more arteries
are directly connected to one or more veins or venous spaces called sinuses." Also, see this page for more info written for patients' understanding.
There are numerous medical reports and personal stories
about DAVF linked to on our Cured Whooshers page, including successful treatments.
This story is a reminder that each case is unique. Treatment can be complicated.
A diagnosis is only one step toward silence.
Like many in our community, this patient was her best advocate and
wouldn't take "live with it" for an answer. According to the story, she was seen by half a dozen specialists before
her underlying cause was identified.
Our community, especially those of us diagnosed with DAVFs, wishes this
patient the best during her recovery and her continued quest for silence! You're not alone!
As this story illustrates,
it's a big accomplishment to find the underlying cause of pulsatile tinnitus, but it is only half the battle.
Weill Cornell Medical College in New York Announces a New Clinical Trial for Pulsatile Tinnitus
The FDA and the Weill Cornell Institutional Review Board (IRB) have approved a new clinical trial for pulsatile tinnitus
at Weill Cornell Medical College in New York City. The study will specifically address cases of stenosis (i.e. narrowing)
of veins near the brain, most commonly the transverse and sigmoid sinuses.
Read more information about the new
clinical trial here.
Support Pulsatile Tinnitus Research! The Otology Research Fund at the University of Maryland School of Medicine
For all of us who have been looking for pulsatile tinnitus research projects, I'm thrilled to announce that The Otology Research Fund, maintained by the the Department of Otorhinolaryngology - Head and Neck Surgery at the University of Maryland
School of Medicine, is conducting - and looking for donations to support - research programs related specifically to pulsatile
If you are inclined to make a donation you should indicate PULSATILE TINNITUS on the donation page and 100% of your donation will go toward PT research.
their site: "Ongoing clinical and translational studies for pulsatile tinnitus include research directed towards understanding
sigmoid sinus wall anomalies, idiopathic intracranial hypertension, transverse sinus stenosis, and other venous causes of
pulsatile tinnitus. These include developing models for reproduction and modulation of pulsatile tinnitus, radiographic
imaging techniques, and surgical interventions."
The School is very familiar
with our community and has been looking for ways to help us - this is a big step!
Thanks to our friends on the other side of the pond for this exposure to help increase pulsatile tinnitus awareness!
The piece is in the Good Housekeeping UK Feb 2016 issue, in their "Look Younger, Live Younger" page.
Whenever it gets still and quiet Hope
drains that I’ll find a peaceful rest Obscured only slightly beneath my breathing Oblivious
to everyone else Seeking ever constantly for some relief I wrestle Hindered by too many
interrupted thoughts Every heartbeat in my chest reverberated like a mighty River flowing.
Leaves me lost. So, I am a one amongst the many Whooshers waiting, wondering bound to
afflicted others by this shared malady Misunderstood by most friends and loved ones and too often Dismissed and misdiagnosed by many in medical communities.
Now as mis-education is finally
being surmounted Our combined voices lift high for singular recognition Many have found
cures from several varied diagnoses Both surgical and medicinal relief from our shared PT condition.
We Whooshers welcome your candid input Testimonies of each one’s urgent plight There is comfort in the sharing, for with each victory gained… There is new hope for peaceful
A Whoosher Medical Mystery: A Pulsatile Tinnitus Case Highlighted and Solved!
What could be better than starting the year off with some excellent pulsatile tinnitus publicity?
For the second
time, The New York Times has highlighted a pulsatile tinnitus case in their column, "Think Like a Doctor."
A patient's case and struggle for a diagnosis for strange symptoms that stump doctors is described, diagnostic test reports
are displayed and then the comments section welcomes ideas as to what the heck may be going on to cause the patient's symptoms.
This week's mystery was about another pulsatile tinnitus patient whose symptoms eluded even some of the best doctors around. As you'll
read, the patient had extensive diagnostic testing and a number of possible causes were ruled out.
Like many pulsatile
tinnitus patients, this one went to an ear specialist after whooshing for a long time. We know that the underlying causes
of whooshing only rarely have anything to do with the ear(s) but it's completely logical for patients to start with an ear
specialist. The problem is, when the ear specialist gives us the all clear (because ear issues typically ARE absent),
often we're sent on our way home without a referral to ANOTHER type of specialist to complete the warranted medical workup.
But the ear specialist in this patient's story, who realized he was stumped and had exhausted his knowledge of the culprit,
did the right thing: Instead of sending the patient on his way, he referred the patient for diagnostic imaging and then to
other specialists to review the patient's films. Without the diagnostic testing, the patient would never ever have been
But the success of a test not only depends on whether the test may detect the cause - it
also depends on the eyes looking at the films. Unfortunately for the patient, again and again, the doctors who reviewed
the films gave the patient the all clear. The films were circulated some more, however, and finally a doctor isolated the
causes - two of them! - and the patient was finally on the road to treatment and silence.
And speaking of the
patient, whose identity was obviously not revealed in the story, KUDOS TO YOU for your persistence seeking a diagnosis and
for being your best advocate. The end of the piece indicates that it was the PATIENT, not a doctor, who self-referred
to the radiologist who ended up diagnosing the cause. Roaming around with all your films in a big place like New York
City with a symptom as wacky as pulsatile tinnitus, and dragging yourself from appointment to appointment after doctors one
by one tell you over and over that "you're fine" and that nothing is evident on your films, is NOT EASY. Good
for him for hanging in there. Enjoy the much-deserved silence!
Unlike tinnitus, many causes of pulsatile tinnitus
can be identified and treated. Our mantra here on Whooshers.com is CIRCULATE YOUR FILMS! Yet again, we have a wonderful example of a patient who
did just that and, because of it, is now enjoying the wonderful consequence of silence!
The diagnosis has been posted, and a link to the details is below.
UPDATE: The diagnosis was twofold: Fibromuscular Dysplasia (FMD) and a fistula between the patient's vertebral artery and vein. And, unlike
any other time, NOT ONE READER guessed the proper diagnoses. The doctor in the piece did though, and the patient is
now Cured Whoosher.
You can read more about FMD and fistulas on our Cured Whooshers page, where individual medical reports and personal stories from real Whooshers are posted.
Usually, you may do so in honor of someone. The funds help our entire pulsatile tinnitus community. Be sure
to indicate PULSATILE TINNITUS when you submit your donation for 100% of funds to be allocated to pulsatile tinnitus research.
7. A Good Pair of Ear Plugs!
Sometimes when an earplug is placed in the ear the sound of the whoosh
subsides. This is especially helpful when trying to get to sleep or while reading. Ear muffs may work, too!
Accompany Us To Doctors' Appointments
We may not ask you to, but most of us appreciate the company.
You may even be able to help organize medical bills, papers, etc.
White noise is often the best noise to mask the pulsing sound of pulsatile tinnitus, because it provides a steady
sound that masks the pulsing rhythm. For many of us, it is the rhythm of pulsatile tinnitus that bothers us even more
than the volume of the sound. As one of our Whooshers put it, the goal is a "soft hum."
great option is a white noise audio file that can be played on an iPod, iPhone, or MP3 player. Many of these are free
online. Help your Whoosher download and play the audio file.
Sound machines that play animal sounds
(crickets, frogs, etc.) or ocean sounds are not usually helpful because those are rhythmic sounds that compete with our whooshing
sound, so please don't buy us one of those!
3. Ask Us How We're Doing
can be a very isolating symptom, especially since it is not visible. It is easy to forget that someone suffers from
it, and how much. It's probably not a good idea for us to dwell on it too much, but asking us once in a while how we're
doing and really listening to our answer helps us cope. If your Whoosher had a doctor's appointment, ask how it went.
Encourage your Whoosher to try to find an audio file that sounds like the whoosh s/he hears, so you can listen to it and understand and bit more what it sounds like (and how annoying it is!).
All funds go toward finding and posting info for the pulsatile tinnitus community.
1. Listen And Learn
About Pulsatile Tinnitus
The best thing a Whoosher can receive is comfort that those around us try to understand
this unusual symptom we deal with and how it affects us. Listen and learn more about pulsatile tinnitus on Whooshers.com. Understand that pulsatile tinnitus is NOT regular tinnitus. It is a rare symptom. Participate with us
on Whoosher Wednesdays through the year and help our community get more attention and support!
This Thanksgiving, I'm thankful for all the Whooshers over the years who have shared their stories with Whooshers.com.
From quests for a diagnosis to the Cured Whooshers stories, our experiences are all worth sharing.
And I'm not
the only one who is thankful! I just received this email recently from another Cured Whoosher:
Comparing my symptoms to others on this website led me to neuroangio.org, where I found enough information to believe I had a DAVF and was able to ask the right questions and request appropriate
tests and referrals. I was referred to a neuro interventionalist, who also believed I had a DAVF and ordered a cerebral
angiogram, which confirmed it. I had a 'large and complex' fistula, potentially dangerous, and definitely causing me
more problems than just pulsatile tinnitus.
Fast forward - I had my second and last embolization on
Sept 22, 2015, and my doctor believes I am 100% cured. The whoosh has definitely been gone since I woke up from that
surgery! I will have a follow-up angiogram in March to confirm that I need no further treatment. Oh, and my doctor
has actually mentioned Whooshers.com more than once, asked if I was familiar with it and if I felt like the website helped
lead me to the correct diagnosis! So thanks to this awesome website and wonderful support group I found on the Facebook page, I am one happy cured whoosher."
Keep sharing your stories with
us! Happy Thanksgiving, everyone!