When I started whooshing almost three years ago, it took months for me to find any doctor who had even heard of pulsatile
tinnitus. And even then, it was difficult to find a doctor who knew what to do, what tests to order, and what it could
mean.
I remember the very first doctor who took me seriously. When I told him, "I hear my heartbeat,"
he looked at me with concern, not a shrug of the shoulders like the previous doctors. He cared, and he was alarmed,
but still, he admitted he didn't really know what to do.
Even so, in my view he did the next best thing to "knowing"
what to do: instead of sending me out the door with nothing, he referred me to another doctor who might know a little
more about my symptom.
And just like that, finally, I was on the right path for answers. One step led to
another and soon I'd find out the cause of my pulsatile tinnitus.
One of the doctors I saw next was neuro-opthalmologist,
Dr. Mo Fouladvand from NYU Langone Medical Center. Except for the doctor who'd provided me with the referral, Dr. Fouladvand
was the first doctor who spent more than 5 minutes with me in the examination room, and he was the first to attempt to listen
for my whoosh with a stethoscope (I had never considered that anyone else might be able to hear it, but it turned out I have
objective pulsatile tinnitus, so it can be heard by others). Are you surprised that a neuro-opthalmologist would be
familiar with our symptom? Me too, but he was! With the stethoscope he could hear my whoosh. All those doctors
who told me I had "regular tinnitus," and "live with it," and all those doctors who suggested I might
need psychiatric attention, and all those feelings that I was beginning to have that I may really just have to deal with this
for the rest of my life, went out the window and poof! I was on "Recognition Lane," the road on which only
doctors who understand this rare but REAL symptom drive.
A future stop was to Dr. Jeffrey Olin, a wonderful
cardiologist at Mt Sinai School of Medicine, whose attention to and interest in my symptom was apparent from the first minutes
of my visit with him and his impressive team. I had a thorough check and we ruled out a lot of things, which, I suppose,
would be a relief to any other patient, but for whooshers it's a catch-22. Sure, it's great to know you don't have a
life-enduring condition, but then what explains the whoosh? Yet, the importance of being happy for the things that are
ruled out, even if there is frustration because no cause is yet determined, settled with me that day. Also, I was grateful
(and yes, my cynical self was surprised) to have found yet another doctor who treated me with respect and not with the "you're
crazy" look.
And soon later, I met Dr. Maksim Shapiro, founder of neuroangio.org and part of the uber fantastic team of neurointerventional radiologists at NYU's Langone Medical Center, the team that ultimately
discovered the cause of my whoosh via a cerebral angiogram. Except for that moment when Dr. Fouladvand told me he could
hear my whoosh, the moment when I was told the cause could be identified on the cerebral angiogram was the best moment in
the whole process. Weird, isn't it? To be glad that something wacky in my body was identified? If you're a whoosher,
you understand (and maybe still hope for) that relief.
So, it is with great pleasure and admiration, almost three years
later, that I publicly thank these three doctors, not only for the ways in which they've helped me, and for their
support of Whooshers.com, but also for their dedication to many, MANY other patients, a growing number of whom are whooshers.
Thanks to them I've learned much over the last three years and met many more doctors who've helped me personally and who provide
help to a significant number of other whooshers all over the world.
In part, it is because of them that I felt motivated
to launch Whooshers.com. One of the most frequent complaints I hear from whooshers is that their general practioners
blow them off when they tell them about their symptom. I know what that's like. And you know what? This
may surprise some of you, but I think that most doctors are, like these, extremely dedicated to their patients; I don't think
all of those who blow off patients with pulsatile tinnitus are bad doctors or the meanest of mean people. I'm
convinced that pulsatile tinnitus is just too rare for its own good, and few doctors are trained to know what it is or how
to deal with a whoosher when one walks into their offices.
Which brings me to (drum roll, please!) an exciting
addition to this site:
Top Ten Pulsatile Tinnitus Tips For Doctors!
Now, patients have a document they can take with them to doctors' appointments, inviting doctors to learn more about
a relatively rare symptom that could have very real and serious consequences if not addressed appropriately. I know better
than anyone that it doesn't take an expert right away - it just takes a doctor willing to learn more and/or refer a patient
to another doctor who may know more.
Recently, all of the doctors I mentioned above agreed to collaborate on this document
for Whooshers.com. It's an excellent two-page introduction to pulsatile tinnitus, written by doctors of differing specialties,
for all doctors.
As we know, underlying causes of pulsatile tinnitus bridge many different specialties; not every doctor will be an expert in every possible identifiable cause. That's why it's so important for
all doctors to recognize the significance of collaboration and patient support in cases of pulsatile tinnitus.
In
that spirit, I invite you to review this new document with your doctors! It could be the push needed to have your symptom
properly addressed, or for that referral to another doctor who may do the same. My goal was to create something that
I wish I'd had at my very first doctor's appointment three years ago. I'm so pleased with how it turned out, and I hope
it will help other whooshers out there!
Please shoot me an email if this document helps you! I would love to hear from you. Good luck in your search for proper medical attention and
answers!
Top Ten Pulsatile Tinnitus Tips For Doctors may be downloaded at the top of this page (it is a PDF file)!
-WhooshEr
