One of the most common questions from pulsatile tinnitus patients:
What do I do when a diagnostic test is returned
"normal" or "unremarkable," and doctors tell me to "live with" the whooshing?
My personal
view? Get copies of the films and take them to several other radiologists for review. We know from stories like this one, this one and this one, that things get missed all the time.
All of these stories (two of the three are personal accounts written by
whooshers themselves) are about pulsatile tinnitus patients who were once told their films were normal, but after more careful
attention (and sometimes years or even decades later) a significant underlying cause was found in
each case. Today, each whoosher has been treated and CURED. NO MORE WHOOSHING. Their stories are among many others
on our "Cured Whooshers" page.
An opinion piece in today's The New York Times titled, "Treat the Patient, Not the CT Scan," by Abraham Verghese, addresses the issue of diagnostic tests: the way doctors rely on them, review them and, sometimes,
use them as a substitute for the traditional doctor-patient care that many of us patients still very much need and expect.
Many pulsatile tinnitus patients have experienced this dilemma. On one hand, a test that is returned "normal"
is probably void of a "biggie" like a brain tumor or other glaring health risk (although, as the author suggests
in the article above, even biggies are sometimes overlooked). Theoretically, it's good for a test to come back
normal except, for a pulsatile tinnitus patient, that likely means there's no explanation for the pulsatile tinnitus -- the
whooshing that compelled you to visit the doctor's office in the first place.
Every pulsatile tinnitus patient presents
a rare case. We're each different. Every doctor is different, too. The underlying cause of pulsatile tinnitus
is often elusive.
Since the launch of Whooshers.com, many of us have shared our stories. So far, it's been
very rare to hear about a pulsatile tinnitus patient who was diagnosed upon the very first diagnostic test.
Here are
some ideas: ask your doctor to listen to the side (or sides) of your head where you hear the whooshing. Can s/he hear
the whoosh with a stethoscope? Do you have other symptoms? Does pressing on the side of your neck pause or lessen the whooshing?
Does increasing your heart rate have an effect on the whooshing?
Has your doctor asked you some or all of the questions
we've asked in our Whooshers.com polls? If not, why not? The poll questions on this site over the past two years provide an inside view (and sound!) of the
experiences of pulsatile tinnitus patients all over the world. The poll results may provide insight, especially to a
doctor who may have never had another pulsatile tinnitus patient in his/her career.
We've visited the issue of the
doctor-patient relationship before in this post and this post. It's a subject of dear importance to pulsatile tinnitus patients. While the focus of his article is not specific
to pulsatile tinnitus patients and their care, Mr. Verghes suggests, generally, that conversation and bedside manner between
the doctor and patient is as important to our care -if not more- than the data on diagnostic films.
The
cause, sigmoid sinus diverticulum, has already been explored on Whooshers, but the solution discussed in the two reports is different. And actually,
this is a rather old article, as it was published in 2002. But, beyond providing an alternative remedy for the same
condition, I thought this article was significant for what the writers included in their report: some insightful points of
view that can be understood even by someone without a medical degree.
Such as (emphasis added):
"Very
few articles have described the treatment of patients with pulsatile tinnitus besides the description of the case
itself. The objective of our study is to report a case of disabling objective pulsatile tinnitus, the surgical
treatment of which via an endovascular route led to its cure, reestablishing the patient's quality of life..."
"P.R.S., a 54-year-old man, complained about a pulsatile tinnitus in his left ear for the prior 3 years, with
spontaneous onset and no remission since then. He was strongly convinced that his tinnitus was responsible for his
hearing difficulty because compression of the left part of his neck caused tinnitus to disappear and hearing to improve.Tinnitus thoroughly disrupted his life, prohibiting normal sleep and concentration patterns and leading to suicidal
intentions. No other complaint was present. The ear, nose, and throat and neurological examination results were normal.
However, during auscultation of the ear, we noticed a pulsatile rough bruit coming from the left external canal and from the
mastoid, which completely disappeared with a light compression of the ipsilateral jugular vein..."
"Owing
to the important decrease in the patient's quality of life, we opted for obliteration of the venous diverticulum.
The procedure was performed under general anesthesia, puncturing the left internal jugular vein and introducing a self-expanding
8- × 60-mm stent covering the transverse sinus and the opening of the diverticulum..."
"As
this condition does not implicate a neurological risk, it is advisable to employ a less aggressive treatment, aimed
at normalization of blood flow and venous drainage and at anatomical preservation of the involved sinus. However,
our patient's quality of life was so disrupted because of the pulsatile tinnitus that we were obliged to discover an alternative
solution..."
These doctors really listened to their patient. Even though the pulsatile
tinnitus didn't present any "neurological risk," the doctors recognized the debilitating effects it was having on
the patient's life.
Although some of us are faced with underlying causes that are a health risk (and therefore
MUST be addressed), many others are faced with an underlying cause that, while not dangerous, still presents a terrible prognosis:
living with the whooshing forever. My PT cause is not a health risk per se, but it has had a profound effect on my day-to-day
life. Now -- after almost two years of whooshing and over a year and half since my underlying cause was identified --
I face the rather daunting dilemma of either "living with it," or attempting surgical or interventional procedures
like this one, that haven't been performed many times.
So, it's obvious why this article struck a chord
for me. How many of you are in the same boat? Ultimately, we each want to know the cause of our pulsatile tinnitus,
but sometimes, even with that knowledge, questions -- really difficult ones -- remain.
I admit though, knowing the cause
of my pulsatile tinnitus is still WAY better than not knowing. This article's conclusion sums up what we're trying to
convey here at Whooshers.com:
"The adequate identification of the possible etiology
of pulsatile tinnitus is of utmost importance to determine the appropriate treatment for each
case..."
See this and other reports of pulsatile tinnitus patients who have been cured on our Cured Whooshers page.
Another Treatable Pulsatile Tinnitus Cause: Aneurysm of Dural Sigmoid Sinus
I recently heard from a whoosher who had a ton of diagnostic tests that revealed nothing, until a recent cerebral angiography
revealed "aneurysm of a dural sigmoid sinus."
I posted a link to a medical journal article about this
cause back in December. I'm reposting the source, as well as a couple others that I've since found (with the help of our fellow whoosher!),
so if any of you have been diagnosed with this you can review them with your doctors.
Have any of you also been
diagnosed with this? According to these articles, this cause is quite rare. Feel free to write me at whooshers@gmail.com if you have been diagnosed and would like to connect with others like you. Or join our Facebook group page!
Here are some links to medical journal article abstracts about this cause.
