Finding Answers, Trusting Experts & Making Good Medical Decisions
The video above belongs to Universal, not me. And by
the way, pulsatile tinnitus is very rarely noise-induced!
The New York Times recently published
an opinion piece titled, "Why We Make Bad Decisions," by Noreena Hertz. She wrote from a patient's perspective but with a researcher's view on how the odds are stacked against
all of us to make bad decisions when it comes to our personal medical care, unless and until we become more engaged.
ailment was not pulsatile tinnitus, but virtually every other aspect of her story will sound familiar to every whoosher: a
mystery illness; multiple doctor visits, sometimes across state lines; opinions received by "experts" about what
to do next that are often in conflict with each other. Many doctors told her nothing was wrong with her, but in the end there
was, and it was rare (sound familiar?). And even after a diagnosis, there were decisions to make about which procedure to
undergo to fix it. Decisions everywhere!
So what to do? Well, as Ms. Hertz points out, we need to ask questions. Not
only about what the cause may be, or what the solutions may be, or what the diagnostic tests reveal. We need to ask ourselves
What I thought was very interesting about her opinion piece was the notion that our biases impact
our decision-making process, not just our decisions, and that this happens all the time. Are you the type of person
to always trust a person in a white coat? Why? Do you hide your anxieties with those closest to you, and even yourself? When
it comes to medical advice, do you hear what you want to hear as well as what you don't want to hear?
there's the Internet - the never-ending information grind. You can find a web site to substantiate anything. That freckle
on your pinkie toe? If you want to find a page that confirms it's a tumor, you can. If you want to find a page that
indicates it's no more than a birthmark, you can. There is probably a page somewhere that will convince you that the
freckle is a sign that you will one day win the lottery or that your first born child will win the Nobel peace prize.
These days we have access to more information than any other time in history. Most people know that the Internet
is full of good and bad information. So how do we best process information, to decipher the "good" from the "bad?"
And - leaving aside the bad information for a moment - with so much information available, why is it still so difficult to
find clear answers?
Oh and there are also studies she references and, well, the personal stories we have heard over
and over again here on this site, of doctors misdiagnosing us time and time again, and providing misguided advice. Some
common examples to members of our community are, "You just have to live with it," before a single diagnostic test
(because they think pulsatile tinnitus is like regular tinnitus for which there is no cure) or, "Your test is clear,"
after reading a diagnostic test but not recognizing a completely separate and evident cause than the one originally being
Ms. Hertz's short piece poses the underlying question: how much should we trust the experts who tell
us what is or isn't wrong with us? Where does their confidence come from? How can we gauge that? What is our
confidence in them and with ourselves all about?
I don't think she's implying that we shouldn't trust "experts"
at all, but instead that we should be more aware of how we patients process information, including and actively engaging how
we feel into the process. Eagerness to hear what we want to hear combined with a blind faith in the "experts"
we seek help from can be a dangerous combination if we're not careful.
One aspect of the piece that I sort of disagreed
with was the tendency for patients to hear what they want to hear. I think that simplifies the issue a bit too much...
we all experience feelings of denial and difficulty facing difficult situations but that isn't always the same thing as avoiding
truth all together. Look, I know a lot of whooshers who secretly (they tell me, but otherwise it's secret) and with
every ounce of their being wish to be diagnosed with a brain tumor. And, as irrational as that may be, I get that. At least
with a brain tumor there is treatment. Anywhere you go, whoever you tell, when you say "brain tumor" there is acknowledgement
and severity and validation that a serious health issue is at play. At least with a brain tumor something can be seen
on a diagnostic film and doctors can point to it. When you have an invisible symptom that you can HEAR EVERY SECOND LIKE A
LOUD DRUM IN YOUR BRAIN, it's surprising to consider that it's anything BUT a big, fat tennis ball sized tumor in your head.
Many causes of pulsatile tinnitus evade doctors, even the "best-of-the-best." It doesn't take that many whooshers
too long to start feeling crazy when more than one doctor rolls their eyes or scribbles notes that indicate you may need psychiatric
care because you're "hearing things." Meanwhile WHOOSH WHOOSH WHOOSH... it doesn't stop.
The truth is, our
cases rarely are the result of brain tumors or other dangerous causes. But they can be, which is why we (and doctors
who understand our symptom) persist in a search for answers.
I think, for whooshers, there are two outcomes sought:
in the short term it is finding proper medical attention, evaluation, and care; and in the longer term it is finding a diagnosis
or prognosis. You need to learn to walk before you can run.
Sometimes a diagnosis feels like an impossible achievement.
And indeed sometimes a cause cannot be found. But we know that for a growing number of us, it can. Some of us don't have the insurance or money to get there though. And when you're dealing with a rare symptom like pulsatile
tinnitus, you may encounter experts who tell you before evaluating you properly that there is no diagnosis or cure. Should
you believe them? If you believe them, why do you believe them? Those questions are for each of us to answer ourselves.
again, all this boils down to being your best advocate, doing your research and finding a support network to help you help
yourself. We all need doctors, we really do, but we also need to remember to listen to ourselves.