Poll Results: Have You Been Told to "Live With" Pulsatile Tinnitus?
Yes 83.3%
No
13.9%
Other 2.8%
Total Votes: 36
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Patient-Doctor Relations & The Pulsatile Tinnitus Patient
Unless you’re incredibly lucky, you’ve had a malady or two before the pulsatile tinnitus
began.And you’ve been to doctors’ offices before.By the time I started
seeing doctors regarding the whooshing heartbeat sound, I'd already learned the drill:
(This example is based on
my experience in the United States.Obviously, depending on where you live, this may vary.)
Call doctor’s office (with a referral?), make an appointment after
being on hold for a while because of stressed office staff, wait for the day of said appointment (often days or weeks), make
a mental list of symptoms and anticipate other questions that the doctor may ask (dig up necessary medical history files,
if necessary), [night before appointment:] make sure the alarm is on, [morning of appointment:] wake up (with hope that I’ll
wake up tomorrow with more answers than today), check the address (again) to make sure I’m going to the right office,
inhale, exhale, get in my shoes, take the bus/train/car and make my way to the doctor’s office, with or without iPod
or white noise earbud, depending on how loud the whoosh seems.
WHEW! That's a lot, but such
is life. If you're a pulsatile tinnitus patient, you may also have increased anxiety to deal with, in addition to the
"normal" preparation for a doctor's appointment. I mean let’s face it: if you have strep
throat or a broken leg or another easy-to-diagnose issue, you can be fairly certain that you’ll leave with a prescription
or a cast.However, if you’re a pulsatile tinnitus patient, and you’ve surveyed what other
pulsatile tinnitus patients have said on this site and many others, you already know that it’s not uncommon to leave
the doctor’s office with no more answers than when you arrived.
A general experience at a doctor’s office
might go something like this:
Check in, fill
out a stack of forms, WAIT (even if we were early for our appointment), get called to the examination room, get asked boiler
plate questions by the nurse, WAIT for the doctor, say hello to doctor who enters the room [determine first impression –Did
the doctor smile at me? Shake my hand?], answer doctor's questions and hope that s/he has some helpful advice, be directed
by doctor back to the front desk, pay insurance co-pay. Leave.
If you’re a whoosher, at some point in the experience described above you’re also likely to:
1) be
compartmentalized in a box (for example, we pulsatile tinnitus sufferers are often mistakenly boxed in with regular tinnitus
sufferers) and told to “live with it,” OR 2) asked to have a diagnostic test or two, OR 3) you may be referred
to another doctor.
My personal layperson view is that choices 2 or 3 should be the most common, but I
don’t think this happens in reality.Plus, each of us is different.
Speaking for myself, going to the doctor (for just about any reason) feels a bit like going through airport security.Even when I do everything I'm supposed to do -- get there early, remove my shoes and all metal items and change from
my pockets, reveal my identification AND my boarding pass, etc. -- it often still feels like it’s ME against
THEM, even though we’re all on the same side.It feels robotic.At the airport,
we know the people behind the scanners and guard rails are there to help us, but it’s impossible not to sometimes wonder
if one requirement of the job is forgetting everything you were ever taught about common decency.I know
I’m not the only one who has asked myself, is that person human?
Don’t get me wrong,
I’m not talking about discipline… I think it’s very important for airport screeners and doctors and every
professional to remember what they’re trained to do.But we’re all human.And when pulsatile tinnitus patients look for medical attention, we’re even more vulnerable to the psychological
impact of our symptoms.
The New York Times recently published an article titled, “Not on the Doctor’s Checklist, but Touch Matters,” by Danielle Ofri, M.D.Dr. Ofri suggests that a physical examination, where the doctor actually touches you, can be a crucial
aspect of the patient-doctor relationship, even if it doesn’t directly aid in the diagnosis of the physical problem.She writes generally, not about pulsatile tinnitus patients, but I think it’s an important point.
I’m not a doctor, but I do feel qualified to suggest that the human interaction aspect of a doctor’s
visit may very well have an impact on how the visit ends, e.g. the diagnosis and general feelings of and trust for the doctor.
The old saying, “Sticks and stones may break my bones but words can never hurt me,” is not entirely
true, as far as I’m concerned.Hearing my first doctor say, “Live with it!” before he
did a single test to determine the cause of my pulsatile tinnitus, hurt a LOT.Especially since, in my
case, he was wrong.
When you’re in a doctor’s office with pulsatile tinnitus, words
matter a lot.So does eye contact.When you’re suffering from pulsatile tinnitus,
asking for a little compassion and out-of-the box thinking is not asking too much.
There are all sorts of reasons
why people go to the doctor, and there’s probably a standard checklist that doctors learn in medical school for each
possible condition.In some situations, a lot of doctors ask questions and never physically examine their
patients.The decision whether to physically examine a patient may be part of a “standard”
learned in medical school.
Dr. Ofri concedes that there may not be any scientific evidence that a physical examination
provides any quantifiable benefit.Does that matter?As she says, “touch is inherently
humanizing,” and “[a] physical exam is likely to produce a bond, if not a diagnosis.”
When the
person walks into the examination room with a white coat, the patient understands that the doctor has studied hard for many
years and paid a lot of money to become an expert. But sometimes that’s not enough.Dr.
Ofri’s premise is that if a doctor doesn’t address some other needs of the patient, it can be damaging to the
doctor-patient relationship and maybe even to a proper diagnosis.
She says:
“I cringe whenever our hospital administration refers to the doctors and nurses as “health
care providers.” That term always makes me feel like a soft drink dispenser at Burger King.I’m
not a “provider”; I’m a person, a doctor.And my patient is not a “customer”
or “client." We are not transacting business.”
Also, while I agree
with Dr. Ofri that the personal touch adds an important humanizing layer to doctor/patient relations, so does interpersonal
communication like eye contact and compassion.So does an acknowledgement that you may not be the best
doctor to treat a pulsatile tinnitus patient, instead of immediately throwing in the towel and saying, “live with it.”
Hey, none of us is perfect.
I would go even further… when a patient
visits a doctor, it’s an opportunity for interaction from which both sides can gain something: I can get answers
to my pulsatile tinnitus, and the doctor can get experience seeing a rare set of symptoms that only 3% of tinnitus sufferers
experience.I’m a mystery… who doesn’t like a challenge like that?!Aren’t
lawyers challenged by a once-in-a-lifetime case?Aren’t actors challenged by a rare opportunity to
play a unique role in film or television?Aren’t you gratified at work when your boss approaches
you with a challenge instead of the run-of-mill duties (well, okay, I guess it depends how much you like your job. Hmmm)?
Dr. Ofri’s article touched a chord with me and I think it will for you, too. It
was a long time before I found a doctor who simply looked up from the clipboard to me in the eye, spent more than five minutes
with me in the room, and put his or her hand on my shoulder to tell me something comforting.
Despite all my rants on this site, I really am not a very needy person, and I certainly don’t need or want anyone to
hold my hand like my mother did when I was three years old or lie to me just to tell me what I want to hear.But
a smile once in a while, a hand on the shoulder, a nod of understanding, or an ear of appreciation -- beyond the allotted,
standard five minutes -- for the anxiety I’m living with, would be nice.
It may not just
be nice; it may even play a significant part in my (our) diagnosis, treatment and (soon, I hope) recovery from the cause of
pulsatile tinnitus symptoms.
I'd like to end by thanking all the doctors out there who ARE empathetic toward pulsatile
tinnitus patients, like this one that I referred to recently. They are out there, and they do not receive enough credit (or referrals!). Paying attention to human needs is
the crux of stories like these.I hope other doctors and patients like youread them.
is a topic and case report that should be reviewed with your doctor.
While there is too much
medical lingo here to interpret without a medical degree, what is clear from the abstract (aka, a summary of the article)
is that this is yet another case of pulsatile tinnitus being diagnosed and cured. Only the abstract is available for
free; your doctor may be able to access the entire article for a fee.
This particular patient is a 63-year-old
woman who started experiencing right-sided pulsatile tinnitus after a bicycle accident. A normal CT scan did not reveal
the cause, but doctors used a "C-Arm Cone-Beam Computed Tomography," and were able to identify and fix the cause
of the whooshing.
The abstract even says, "[the] patient's symptoms resolved immediately after the procedure."
Another
whoosher cured! Anyone who tells you that there is no cure for pulsatile tinnitus is not paying attention to articles
like these. Some causes can be identified and cured.
Department of Neuroendovascular Therapy, Kohnan Hospital, and Department of
Neurosurgery, Tohoku University Graduate School of Medicine, Sendai, Japan (Sato) Department of Neuroendovascular Therapy,
Kohnan Hospital, Sendai, Japan (Matsumoto) (Kondo) Department of Neurosurgery, Tohoku University Graduate School of Medicine,
Sendai, Japan (Tominaga).
A Whoosher Looks for Answers -- An Update on Blondie
People with pulsatile tinnitus search for answers. We're like jitterbug investigators. We have all sorts of
diagnostic tests, sign myriads of medical forms, try to explain what a "whoosh" sounds like to someone who can't
hear it (and may not even really care but has to ask) and, more often than not, go home with no more information than when
we woke up that day. Some doors close in our faces, others open slightly and then slam right back in our faces.
Sometimes the door slams in our faces and then the screen door slaps us on the way out. It's enough to make anyone crazy!
But then, just when you lose all hope, sometimes you find a doctor and a medical team who understand pulsatile tinnitus
and its long list of possible causes. "Let's try this," they say. Welcome words to someone who's heard
"live with it," too many times!
Many of you know our whoosher friend Blondie, at Tales From Clark Street. Blondie has blogged about her experience with pulsatile tinnitus since it began over three years ago. If you
haven't already had the chance, take some time to read through her posts.
In the spirit of whoosher support,
she's asked for some funny and supportive haiku she can take with her to the hospital. Post your pulsatile tinnitus
support haiku on Blondie's site or leave one here!
Dear Whoosher doctor:We're rooting for you
to findBlondie's whoosh culprit!
To see previous Whooshers.com posts written by and about
Blondie, do a search for "Blondie" in the search box at the top of this site or click here.
Pulsatile tinnitus
is distinguishable from regular tinnitus. It is possible (and may even be likely) that the cause of pulsatile tinnitus
can be determined and remedied.
