Recently, an article about pulsatile tinnitus was published in "The Altamont Enterprise & Albany County Post," a local
weekly paper in upstate New York. I was contacted to include comments for the article and provided them; I was thrilled that
the paper had decided to devote a portion of their paper to pulsatile tinnitus.
However, after the article was
published in hard copy and posted online, I was surprised to read that it included some inaccurate and unclarified information
about pulsatile tinnitus and the doctors who treat the symptom. Further, the article was published without my review
nor (more significantly) the review of a doctor.
I quickly brought these concerns and an opportunity to correct
them to the paper's attention, and well, for a variety of reasons, changes were not made to the article, which is still available
online since its original April 2011 publication.
Like many of you, I first discovered the term "pulsatile tinnitus"
online, not in a doctor's office. Hardly any of my doctors even knew what pulsatile tinnitus was, not to mention what
might be the cause of it.
And, as many of you have probably figured out, there's a ton of misinformation
online. There are trolls on message boards that cut and paste misguided bullets lists of "things to do" when
you have pulsatile tinnitus. There are articles written about tinnitus that mistakenly and misleadingly mingle pulsatile
tinnitus symptoms and causes with those of regular tinnitus. There are ads for medication and supplements that falsely
claim to "cure" pulsatile tinnitus. I could go on and on.
Sometimes, the intentions are
good and sometimes they are not. It's not easy for the typical online reader to distinguish the intentions behind any
piece online, especially since virtually anyone with any level of knowledge can publish content online.
safe to say that we all feel the same about the bad-intended predators out there... especially those who are out to make a
quick buck or a quick page view, with promises of helping patients (victims) who buy their products, these people are in a
group by themselves. Instead of writing what I really think about these people, I'd rather leave them there and leave
it at that.
But then there is the murkier group: those with good intentions who just don't dig deep enough
to provide the information necessary for a complete and accurate account of pulsatile tinnitus, a rarely diagnosed and extremely
complex medical issue.
In my view, the only thing worse than no information and bad information is MISinformation.
When it comes to health issues, details matter.
When I was told that no changes or notations would be made
to the original article, I was sort of flabbergasted. It's a health issue... why not correct the record? Or, as
I suggested many times, don't take my word for it... why not have the piece reviewed and commented on by doctors who study,
know and understand pulsatile tinnitus? My offer to help connect the paper to doctors I know and trust to provide this
sort of clarification was met with silence.
In response to the lack of response, I decided to clarify portions
of the piece by writing a "Letter to the Editor," which was generously printed in the paper. The problem?
To my knowledge, an online version of my letter was not published, even though the original article was, and still
is, available online. I had hoped that my letter would supplement the original article, both online and offline,
so that *all* readers who find the original article would have a reference for -or at least an opportunity to consider- what
I thought were significant points. Hard copies may get tossed in the garbage but, as we all know, articles posted online
are searchable and accessible forever (unless they are taken down or changed), as is the original article to which I refer.
So, I'm pasting the text of my "Letter to the Editor" below. I do this not because I'm
angry or because I want to one-up the source in the story, the reporter, the editor, the publisher or the paper. The
reason is simply to provide readers and pulsatile tinnitus patients clarified information and the opportunity to learn more
about a health issue that debilitates many of us and frustrates all of us. I am not happy that folks reading the original
article online are still provided no indication that the paper has been made aware that it printed information that, in my
view, may not be completely accurate. I should add that I was quoted accurately in the original article; my concerns
surround the other parts of the article and my and Whooshers.com's perceived --but nonexistent-- association with that other
As I mentioned in my letter, I am pleased that the paper decided to devote a piece to pulsatile
tinnitus; we who suffer from this rarely diagnosed symptom do not yet get all the attention we deserve. I just wish
more thoughtful consideration would have been made in preparation of the piece and to my concerns. Every bit of consideration
that we do get --good OR bad-- matters.
I started Whooshers.com to fill in the void of lack of information
AND misinformation about pulsatile tinnitus. Every "Cured Whoosher" story / pulsatile tinnitus cause described on this site is supported by a medical institution(s) and the doctors who work
very hard to help their pulsatile tinnitus patients. Links to those sources are provided.
As I say all
the time, the Internet isn't a place to diagnose ourselves or each other, or to "cure" pulsatile tinnitus; doctors'
offices are. And, like many of you, I am not a doctor-- I'm just a patient who has navigated and continues to navigate
the road to treatment, with the help of doctors who know and understand pulsatile tinnitus. The Internet is a great
resource to pool information and support for what can be an isolating and debilitating symptom, but we need to be careful
about what and whom we trust.
That's an unfortunate but necessary lesson to learn and remember.
is my Letter to the Editor, published May 5, 2011:
I appreciate the attention to pulsatile tinnitus, often
an invisible health issue and one that is so misunderstood. I wish to make a few clarifications, so that people who
research this issue will find accurate and consistent information wherever possible.
Pulsatile tinnitus is a symptom
of an underlying cause -- it is not a condition. The list of possible causes is not limited to one medical realm.
For one individual the cause may, in fact, pertain to problems in and around the ears, while for another the underlying cause
may manifest in veins, arteries, head, neck or a different area of the body.
There are many doctors around the
world who research and investigate pulsatile tinnitus cases and have so for some time. Whooshers.com highlights dozens of examples of medical journal articles and case studies, written by doctors, for doctors, which patients
are encouraged to review with their own doctors. We help patients find medical professionals who are familiar with pulsatile
tinnitus cases whenever possible. Indeed, compared to more common health issues, there are far fewer medical professionals
who have seen a pulsatile tinnitus patient walk into their offices, but there are more than two, and they do not receive enough
In addition, aneurysms and tumors, while potential causes of pulsatile tinnitus, are not
common causes of pulsatile tinnitus. The article's mention of these possibilities and not others shades a devastating
prospect on a symptom that is typically not as serious. There simply is not enough research on pulsatile tinnitus cases
to conclude that all cases are caused by any one, two or three causes.
Also, there is no specific diagnostic test
that will detect the underlying cause for every pulsatile tinnitus patient, so we often endure multiple tests. The success
of any diagnostic test depends on the cause(s) it is created to detect, as well as on the eyes that are reading the films.
Contrary to the article, MRIs (more precisely, the doctors reading the MRI films) do detect underlying causes in some pulsatile
tinnitus patients; there are links to studies on Whooshers.com that support this. Patients should discuss diagnostic
options with doctors who are familiar with the symptom and the long list of possible underlying causes before ruling out the
use of any particular test.
Without a doubt, the underlying cause of pulsatile tinnitus sometimes is serious.
In some cases, pulsatile tinnitus is the only symptom of a condition that is life threatening. But it is not “always
serious.” For these reasons, pulsatile tinnitus, unlike the "regular" more common form of tinnitus,
warrants distinguishable, individualized, prompt and thorough medical attention.
It is important to note that there
are idiopathic causes of pulsatile tinnitus that are not able to be determined. Patients should accept this diagnosis only
after diagnostic tests and a full medical work-up have been done.
Pulsatile tinnitus is a symptom that few people
understand and endure, but it no longer has to be an isolating one. With the help of doctors, increased awareness, accurate
information and support, many of us are finding proper diagnoses, treatments and even cures.