Due to the fact that pulsatile tinnitus is a rare symptom, many of the emails I receive from patients go something like
this:
"I have pulsatile tinnitus. My ENT thinks it's tinnitus. How do I convince him/her that pulsatile
tinnitus is different, that it warrants medical testing, and that a cause may be identified?"
The key, I think,
is to refer them to medical reports. If your medical professionals give you a hard time about relying on "Dr Google,"
remind them that the reports/abstracts listed on Whooshers.com are from medical journals, which include pieces written by
their colleagues: medical professionals who are familiar with our cases. If a doctor won't take time to read a medical report
to learn more about an area s/he may not be so familiar with, well, I'd want to find another doctor.
We here
at Whooshers.com agree 100% that self-diagnosis is not in anyone's best interest and we recommend against it. But just because
a medical report is online does not mean it's bogus. In fact, most medical journals now post articles and abstracts electronically,
which has been a very positive factor in the recognition of and treatment for rare symptoms, including pulsatile tinnitus.
Whooshers.com has scores of links to medical reports written by doctors, for doctors that explain the difference
between tinnitus and pulsatile tinnitus and, more specifically, the medical workup warranted when a pulsatile tinnitus patient
walks into a doctor's office. You can find them under "Resources" on the home page and many, many more specific
reports about specific causes and treatments on our Cured Whooshers page. The Cured Whooshers page also includes personal stories written by patients, many of whom articulate quite well the
impact of the symptom during their journey toward a diagnosis and treatment.
Here is a list of a few resources to get
you started, to put in your back pocket before heading to your next doctor's appointment:
1. Click Here to Download the PDF, "Top Ten Pulsatile Tinnitus Tips for Doctors." Review it with your GPs and ENTs!
(An easily printable, two page file of need-to-know information!)
2. Article: "Imaging in Pulsatile Tinnitus: Diagnostic Pearls and Potential Pitfalls," B. S. Purohit, R. Hermans,
K. Op de beeck; 1SINGAPORE/SG, 2Leuven/BE, European Society of Radiology, 2014.
(The biggest pitfall of course being that pulsatile tinnitus is often regarded as tinnitus, when it's another
kind of symptom, entirely.)
3. Report: "Pulsatile Tinnitus, Imaging and Differential Diagnosis." Erich Hofmann, Prof. Dr. med. Robert Behr, Prof.
Dr. med., Tobias Neumann-Haefelin, Prof. Dr. med., and Konrad Schwager, Prof. Dr. med., Dtsch Arztebl Int.
Jun 2013; 110(26): 451–458.
(Excellent, to-the-point report. The first sentence: "Pulsatile tinnitus, unlike idiopathic tinnitus,
usually has a specific, identifiable cause.")
4. Show doctors the Whooshers.com petition for a pulsatile tinnitus diagnosis code. A number of doctors have signed it!
(That's right. There's no code yet. We need one, and so do the doctors
who treat us. Not to mention that, if we had a code, health insurance companies would have less reason to fight our doctors
when they order a diagnostic test.)
5. The Whooshers.com Cured Whooshers page.
(Many pulsatile tinnitus stories written by real patients who found answers and treatment. Many medical reports
re the same. NO stories on tinnitus.)
PULSATILE TINNITUS IS NOT TINNITUS!
