Several people have written in with questions about how children with pulsatile tinnitus are affected, including how they
may report the symptoms and what behaviors may help indicate that a child is experiencing tinnitus. Also, some of you
have pointed out that you developed tinnitus at such a young age and experienced the symptoms for so long, you didn't realize
it was out of the ordinary until years later.
Children with pulsatile tinnitus (and many other health conditions)
often have difficulty describing their symptoms and expressing the way they feel. After all, this is a challenge even
for adult pulsatile tinnitus sufferers.
A common frustration experienced by individuals with pulsatile tinnitus is that we endure tests to determine the cause
of the PT, only to get results that come back "unremarkable." One dear whoosher described her "unremarkable"
experience on her blog.
The only thing worse than having a test that reveals something not recognizable by doctors (as described in this post a few days ago) is having a test that reveals nothing because it wasn't the right test to begin with and then having doctors who stop investigating
the cause of your pulsatile tinnitus.
Of course, an unremarkable result can be a great relief. When my
first tests came back unremarkable, I was relieved because I had convinced myself that my whoosh had to be caused by a giant
brain tumor (even though the chances of this were slim). Sound familiar? So yes, I was relieved that the tests
did not reveal my great fear. But after a few minutes of relief, I was faced with: Okay, so now what? What's causing
my pulsatile tinnitus? Will I ever find out?
Truth be told, I was tired of tests. But I was even more
tired of doctors who told me to "live with" pulsatile tinnitus without any explanation. My frustration motivated
me to find doctors who were curious about the cause of my pulsatile tinnitus.
Instead of stopping
the investigation into the cause of an individual's pulsatile tinnitus, these doctors suggest (to other doctors, by the way;
remember, this is a medical journal) that MORE testing be done after initial tests come back normal or "unremarkable,"
precisely because some causes of pulsatile tinnitus DO NOT SHOW UP on some tests.
Even better, the
article lists some conditions and recommends the "best" imaging techniques to diagnose them. It goes even
further about certain conditions. For example, these doctors suggest that benign intracranial hypertension, "often
has no abnormal imaging findings."
Each case is different, but if you're at a dead end and your doctors do not
think more tests are necessary, you may want to share this with them. Even if that CT scan came back "unremarkable,"
you and your doctors may be able to find answers in other tests.
Finally, I recognize that this journal article
and the one in the last post contradict each other a little bit. The previous article suggested that the answers (to some conditions) are often
in the tests and that the issue is finding a doctor who knows what to look for. This article suggests that if at first
you get unremarkable results in a test, have further tests.
I suppose the solution is somewhere in the middle.
Sigmoid Sinus Diverticulum: An(other) Identifiable (And Reparable) Cause Of Pulsatile Tinnitus
We know that there are many possible causes of PT. Sigmoid
Sinus Diverticulum, a condition not many doctors are aware of, is just one in a sea of possibilities. This post is not
so much about the symptoms of this condition. Instead, I'm focusing on the story within the story here. Bear with
me...
Doctors who conducted the study below say the condition can be detected in a CTA/V (computed tomographic arteriography
and venography) and that a “new surgical approach” can correct it. This part of the abstract jumped out
at me:
"Results: All patients electing surgical reconstruction had immediate and lasting resolution of the tinnitus."
Great
news! But the catch is, doctors who look at the CTA/V need to know what to look for. Even the best doctors may
not have this condition on their radar. Apparently, it was first reported in medical journals only within the last few
years.
Couple that with the fact that few doctors specialize in pulsatile tinnitus and voila! Some validation
for all the frustration in finding the cause of your whoosh.
Many of us have had a variety of tests that come back
“unremarkable” or without anything that appears abnormal. This study, completed by doctors for doctors, indicates
that in the case of this particular condition, the answers are often in the films of these tests; it’s just a matter
of finding the right doctor who can recognize the problem.
I hear from many of you who tell me you've had tests over
1, 5, even 20 years, only to find out that the original tests revealed the cause of your whoosh. Regular readers of
Whooshers.com will remember that this was true, too, in the case of the whoosher with Chiari Malformation who told her story
here. Years of suffering that didn't have to happen.
Moral of the story: Don't give up if your tests come back "unremarkable."
This abstract/summary below is for a study that explores diagnosis of sigmoid sinus diverticulum and surgery to correct
it in select pusaltile tinnitus patients.
There aren't many resources about this condition in layman's terms (if you find one, please send it to us!), so ask
your doctor for more information. If s/he hasn't heard about it, provide them with the Web site above!
One patient
describes her experience with sigmoid sinus diverticulum (symptoms/diagnosis/treatment) here.
Remember, this site is not a place to diagnose yourself or others. We’re simply putting information out
there –information that is already out there, but often difficult to find—to encourage you to continue seeking
the cause of your PT, and to inform you as you have discussions with your doctors.
Have you been diagnosed with sigmoid
sinus diverticulum? If so we’d like to hear about your experience at whooshers@gmail.com, or post below in the comments section.
