In the United States we commemorate Memorial Day on Monday, a day to honor our fallen military veterans. It's also
a good opportunity to show appreciation for all the men and women who join the military voluntarily to serve and protect us
each and every day.
More and more, we're hearing (excuse the pun) about soldiers coming home from war zones with injuries
of the brain and hearing problems. All of us who experience some form of tinnitus know that, since tinnitus is not a
visible disability, it is often difficult to be diagnosed and treated. It's often difficult to explain the sounds we
hear to others. Many people suffer for years and years, thinking it's "normal," or they just try to deal with
it because of the fear of ridicule.
According to The American Tinnitus Association (ATA), tinnitus is the number one service connected disability of veterans returning from the wars in Iraq and Afghanistan,
mostly due to exposure to loud noise. Recently, legislators and organizations like the ATA have stepped-up campaigns
for more tinnitus awareness and research, especially within the military community.
Veterans suffering from tinnitus (and even family members of veterans who happen to suffer from tinnitus) may qualify
for benefits and/or participation in current research studies.
Whooshers.com is a community specifically geared
to sufferers of pulsatile tinnitus -- most service-related cases of tinnitus will turn out to be regular, non-pulsatile tinnitus.
Diagnosis and treatment for the two distinctive forms of tinnitus vary. However, we still think that increased general
awareness of tinnitus is a step in the right direction for ALL tinnitus sufferers.
Whether you hear a whooshing,
buzzing, ringing, beeping or other sound -- you're not alone. Millions of people around the world suffer from tinnitus.
We can help each other cope, seek answers and find a cure.
For more information on tinnitus support for veterans
see the ATA links above and in the "Resources" area, or write whooshers@gmail.com.
"Grey's Anatomy" Features Another Possible Cause of Pulsatile Tinnitus: Superior Canal Dehiscence Syndrome
(SCD)
A recent episode of Grey's Anatomy featured a young woman with tinnitus, vertigo and other symptoms, found to be caused by a very rare condition: Superior Canal
Dehiscence Syndrome (SCD). It's not entirely clear in the episode whether she is suffering from the heartbeat-like,
whooshing sound (or at least I didn't catch it, did any of you?), but it turns out that tinnitus of the pulsatile variety
is a common symptom in cases of SCD.
In the episode, the patient's (annoying) parents are convinced that she is schizophrenic,
as are many of the doctors. She insists she's not crazy -- that the sounds are real. No one believes her, EXCEPT
for one doctor (hero!), who takes the time to do a little research and discovers SCD in a recent medical journal. Initial
tests do not show anything, but in one television hour, she is diagnosed (via a rather interesting eye examination), has surgery
(of which kind is not clear) and she's cured.
I love television!
But seriously, SCD is a real condition
that needs medical attention. And doctors have cured patients with SCD, just like they did on the show.
According to doctors at The Johns Hopkins University School of Medicine, SCD is caused by a thinning or complete absence
of part of the temporal bone, and it is often accompanied by hyperacusis. The condition is rare and was only written up in medical journals in 1998. As with other pulsatile tinnitus
causes, it can be very difficult to diagnose. The patient in the show had all kinds of diagnostic tests that came back
"unremarkable" before the tell-all eye exam that revealed the SCD.
There is some fascinating information
about the studies done on SCD patients at Johns Hopkins, including medical resources you can discuss with your doctors, here.
And if you think you may have SCD, see this page from Johns Hopkins for patients.
For the record, the episode of Grey's Anatomy is Season Six, Episode 22 titled, "Shiny Happy People."
As we all know, pulsatile tinnitus is not a condition; it's a symptom of an underlying condition. The trick is finding
which condition is the cause of the whooshing. Each case is different. We've explored many posible causes here
at Whooshers.com, but there are always more, and the goal is to post as many as possible so you can discuss them with your
doctor(s).
An Angiogram Answer -- A Story For Tinnitus Awareness Week 2010!
Exactly one year ago, I was recovering in a hospital after having a cerebral angiogram. For three months,
I had been experiencing the pulsing, whooshing, heartbeat sound of pulsatile tinnitus, but none of the many tests I'd had
-- an MRI, 2 MRAs, CT scan, etc. -- revealed the cause of my whoosh.
But the angiogram DID. The culprit?
A small vein behind my ear near my brain. This wacky vein moved close enough to my ear that I can hear the blood flowing
through it. Scary! But lucky for me, doctors maintain that it's not a life threatening condition.
In
the days leading up to it, I was completely overwhelmed about the procedure. Unlike the previous tests, the cerebral angiogram is considered "invasive." I was nervous (that's
putting it lightly-- I was FREAKED OUT) about how it would feel since I had to remain awake the entre time, and I was concerned
about the risks. The anxiety was exhausting.
The Internet is full of posts by people of all ages who
have had a cerebral angiogram for a variety of health issues, and I'm pretty sure I read them ALL. By the time I checked
in at the hosptial, I was ready. I decided that the risks involved in the procedure were outweighed by the risks associated
with the potential causes of my pulsatile tinnitus. I simply had to rule out the scary stuff. At that point, I
was so concerned and nervous about my pulsatile tinnitus, that I think I almost wanted my doctors to tell me I had a brain
tumor so something definitive could be DONE about it. Irrational as that may seem to people who have never experienced
the whooshing, I was simply worn out from the constant head noise and the not-knowing.
It took a few hours.
When doctors finished the procedure they told me they had discovered the cause of my whoosh. I wept like a baby -- not
because I was in any pain (I wasn't at all) or because I was scared; I was overwhelmed because FINALLY there was proof
that I wasn't going crazy. Pulsatile tinnitus IS REAL, and now doctors had the X-ray films to prove it.
But
while the problem was isolated, I found out pretty quickly that it's sometimes a whole other ballgame to actually fix it.
One year later, I am still in discussions with doctors about what to do. Apparently my whoosh cause is not that common
among pulsatile tinnitus sufferers, so there is some debate about the effectiveness and safety of fixing it.
My recovery time after the cererbal angiogram was very quick. The decision to have the procedure is very personal
to each individual, and the risks need to be discussed in detail with a doctor, but I was glad I did it.
Meanwhile,
I'm going on 15 months of whooshing. I continue to carry around my X-ray films, CDs and medical records from specialist
to specialist to learn more about my options.
I hear from whooshers who have been whooshing even longer
and have so far been unable to isolate the cause. It's a tough stage to be in, but I say keep looking. Even if
you have to see many doctors, it's worth it in the end. Know that there are many of us and that we're rooting for each
other. You're not alone. Sometimes one answer will lead to another quickly, and other times --like in my case--
the process continues slowly. But it's moving, and that's what counts, right?
Pulsatile tinnitus should
NOT be treated like regular tinnitus. Its possible causes are often unique from regular tinnitus and can quite posibbly
be cured if properly identified. In a way, we whooshers are lucky because there is no known cure for regular, non-pulsatile
tinnitus.
In the back of my mind, I have dictated a letter to all the doctors who dismissed my pulsatile
tinnitus early on ... the ones that told me nothing was "wrong" with me, that I was crazy and that I'd have
to "live with it," without even doing a single test. Sure, part of me is mad for the way they treated me,
but mostly I hope that the next pulsatile tinnitus patient that walks into their offices is treated with respect and proper
medical care. One day, I will send those letters.
In the meantime, we pulsatile tinnitus sufferers should
continue sharing our stories with everyone in our lives, especially our doctors. This week (May 16-22) is Tinnitus Awareness Week, a great opportunity to tell YOUR story. Telling your story can lead you in directions you never thought were
possible.
The history behind Whooshers.com is proof of this. Even when I have difficult days, I try to remember that sharing our stories is the first step toward recovery.
Finding doctors who understand pulsatile tinnitus, respect the possible causes, recognize the possible physical issues involved,
and address the psychological challenges associated with it, will follow.
And then the journey toward an answer
can truly begin.
What's your pulsatile tinnitus story? Please share in the comments section below!
Recently, a pregnant whoosher wrote in with the question below. If any of you have any advice for her and other
pregnant whooshers, please leave a comment!
"I am 24 weeks pregnant and have been hearing
the whooshing heartbeat sound since 12 weeks. Right now it is in my left ear only but sooo annoying... I'm curious to know
if it usually goes away after delivery? I can't find much info on what happens after birth..."
