Poll Results: Have Doctors Discovered the Cause of Your Whoosh?
83.8% No (67 votes)
16.2% Yes (13 votes)
Total Votes: 80
We had one comment from a whoosher
whose doctors have discovered the cause of the whoosh:
"Since
I'm one of the yes's, I have to say for years I was told it was nothing... then one day I went in for my vision and a few
months later I was diagnosed with Idiopathic Intracranial Hypertension, for which, surprise! One of the symptoms is Pulse-Synchronous
Tinnitus."
IMPORTANT NOTE: If you are a whoosher who answered "yes" to this poll,
we'd love to hear about your path to finding the cause of your PT. Please write whooshers@gmail.com...we won't post anything without your prior permission.
Thanks to everyone who voted! Please see the
results from other polls on our Poll Results page, and please vote in the latest Whooshers.com poll on the homepage.
On October 2, 2010, Whooshers will meet in New York City for the first Whooshers Group event!
Similar events are in the works for early 2011 in California, Florida and the UK. Specific cities and
venues are being discussed. If you're interested in meeting other Whooshers in any of these areas, or if you'd like
to suggest another area, please write whooshers@gmail.com.
Or even better, visit our group Facebook page and participate in "discussions" (look for the "Discussions" tab) about future events. There are
almost 80 Whooshers there talking about this and all sorts of issues related to "the whoosh," and the group grows
each day. Stop by and say hello!
And thanks for your continued feedback, support and involvement. Keep
it coming!
Another Possible Pulsatile Tinnitus Cause: High Jugular Bulb
Some pulsatile tinnitus patients have a high jugular bulb, which means that it rides higher than normal.
I
actually have a high jugular bulb... my doctors have told me I was probably born with it. And in fact, since I had some
MRIs years ago, years before the onset of my PT, we could compare and see that indeed, I had a high jugular bulb years back.
Here is another medical journal abstract (summary) to share with your doctor. This study is about a non-invasive technique
(ultrasound) to detect a high jugular bulb. The entire article may be accessed on the site for a fee, but ask your
doctor first because they s/he may be able to access it, and this is a medical journal article with some heavy medical lingo.
Some doctors believe that, for some patients, a high jugular bulb is THE cause of pulsatile tinnitus.
There are some cases (like some in this study) of a high jugular bulb being "repaired" to either minimize the pulsatile tinnitus or remove it completely.
In other patients, like me, a high jugular bulb may be a contributing cause but not THE cause... after all, why would something
that I've had my whole life suddenly cause PT?
I'm not a doctor, but it seems that there is probably still a
lot to be researched about the relationship between a high jugular bulb and pulsatile tinnitus. We'll continue to
read and anticipate more studies about diagnosis (like this one) and more in-depth research regarding pulsatile tinnitus
patients who were relieved of their symptoms after treatment.
Do you have a high jugular bulb? Does your
doctor believe it may be a contributing factor in your pulsatile tinnitus? Have you had any sort of procedure to "correct"
it? Please leave a comment (anonymously is fine!) below.
For more general info about "high jugular bulb,"
click here.
A Pulsatile Tinnitus Success Story -- Another Possible PT Cause: Temporal Bone Defect
A couple weeks ago, I met Cathleen, a pulsatile tinnitus sufferer for 7+ years who had just had surgery to correct
the underlying cause of her whooshing. Since she was willing to share her story with more pulsatile tinnitus sufferers,
I am delighted to post her story, in her own words, below. It's long, but so was her quest for a cure. I appreciated
every detail, and I think you will, too.
As I always remind Whooshers.com readers, there are many possible
causes of pulsatile tinnitus. This is a story about one; it may not be the cause of yours. And we're not here
to self diagnose one another... share this and other stories of cured whooshers with your doctors. Many (if not most) of them are subjects of medical journal articles, written by doctors from major
medical institutions around the world.
If you're a cured whoosher reading this, please be in touch
with us at whooshers@gmail.com. If you're willing to share your story, it can be posted anonymously, if you wish, to protect your privacy.
As
a pulsatile tinnitus sufferer myself, I think I can speak for all of us and say that real stories like these keep us going
and give us hope. Thank you, Cathleen! We wish you a speedy recovery... enjoy the well-deserved silence!
Readers, please feel free to leave comments below.
--WhooshEr
About 7 years ago I began
noticing this whooshing sound in my left ear that was synchronous with my heartbeat. It wasn't the thump-thump of a heart;
it was the actual whoosh of blood flow.
Although I felt no pain, I thought I might have an ear infection, so I visited
a local clinic. The doctor there had never heard of such a thing and determined that I had no ear infection. He then prescribed
an antibiotic (though no infection existed) and told me to take the all-purpose Benadryl. Neither helped. Thus began a journey
of eight different doctors, multiple tests, dismissals or a diagnosis of "it sucks to be you," frustration with
the medical community, and finally, at long last, a solution.
I began by educating myself on what was happening
to me. There was little information in 2003 on the Internet but I gleaned what I could. Through WebMD and other sources,
I discovered that I had something that sounded like pulsatile tinnitus and that I needed to see an otolaryngologist. The
American Tinnitus Association sent me a list of several in my area and off I went.
The first three I saw all wanted
to give me hearing tests (despite the fact that I had no hearing issues, but hey it was something that insurance would pay
for). But once I said the word "tinnitus" they froze up. The third one finally ordered the first (of many) MRIs,
but when it came back there was no tumor or anything obvious. I recall that he asked me if the sound went away when I pressed
on the vein on my neck and when I said yes, he said "Well, you can just do that when it gets really bad." LOL...
gee, thanks Doc.
My actual real life job is research, so I read everything I could get my hands on -- every medical
journal, every article, every anecdotal item. I recall the next otolaryngologist I saw got kinda pissy when I talked about
the research I'd been doing on the Internet and asked him questions. He gave a snort of derision of disgust, "the Internet."
(Looking back, I realize now that he was aggravated that I actually knew more about the condition than he did.)
Having struck out with otolaryngologists, I sought out a neurologist. I found the name of a prominent doctor in my area
and tried to make an appointment. One thing I had learned is that doctors' appointment booking clerks like to categorize
you. The booking clerk grilled me endlessly about what I had and finally declared that, (I kid you not) the doctor, "don't
do nothing with no tinnitus." By that time I had already decided that I didn't want to see a doctor who would employ
someone who could construct that sentence.
Another otolaryngologist referred me to House Clinic in Los Angeles. The doctors there were the first to actually know something about my condition. They'd heard of it and I liked
them and felt they truly wanted to help. I had more MRIs, CT scans and....no solution. While they all actually believed
I was hearing what I was hearing, they could find no cause for it.
Over the years, PT ruined my life in many little ways.
With this noise in my head I couldn't get to sleep and I couldn't stay asleep. The great pleasure of reading became
almost impossible. Writing was another joy that fell away; I couldn't concentrate. My work became very challenging and it
made me frustrated and cranky when I didn't want to be. Exercise was even difficult because if my heart rate increased, so
did the volume of the sound. Headaches were frequent and severe. I learned to "rise above" the sound, but it was
a daily battle and not always one that I won. I'm not being a drama queen when I say every once in a great while I even felt
the tinniest bit suicidal! Mostly, it was just a constant weight. I did find that using a silicon ear plug (not foam) actually
muffled the sound just a little bit so it helped with sleep. And yes, I realize that makes no sense whatsoever because the
noise is on the inside of my head, but I guess something about pushing the plug in and creating a vacuum seal worked.
But there was just no real relief.
I found an online posting at The Tinnitus Support Message Board and a medical journal article by Dr. Mattox of Emory University, where he had corrected PT in a patient who had a condition
called sigmoid sinus diverticulum. I contacted him directly and he agreed to see me. Again, I had a great deal of trouble getting past the booking clerk.
She kept insisting that Dr. Maddox didn't see patients with tinnitus and I kept insisting that I had contacted him directly
and he wanted to see me. She finally relented and let me book the appointment.
I arrived at Emory and was swept
off for another 2-hour MRI (as someone who is claustrophobic, I can't tell you how much I HATE MRIs). When I got to actually
see Dr. Mattox it turned out his assistant had booked the wrong test -- she was supposed to book a CT scan. Sigh. Back to
get the CT. Finally Dr. Mattox, who I liked a great deal and also felt wanted to help, reviewed the CT and unfortunately
told me I didn't have the condition that his surgery could fix. I say unfortunately because at that stage I was desperately
hoping for ANY diagnosis that had a name to it (and of course, despite promises from both the assistant and booking clerk
that I would not be charged for the MRI, Emory billed me for BOTH tests and it took six months of phone calls and letter writing
to get it fixed. None of this was Dr. Mattox's fault but it was just kind of adding insult to injury, you know? LOL).
Dr. Mattox suggested that perhaps I might be checked for Intracranial Hypertension (also sometimes called Pseudotumor Cerebri). Through the Intracranial Hypertension Research Foundation (IHRF), I found the name of Dr. Swaraj Bose, an ophthalmologist at the University of California at Irvine (UCI). I also liked Dr.
Bose a lot... after a while you can tell when a doctor is genuinely interested in finding out what is wrong with you and those
who just want you gone because they haven't a clue. I had a multitude of tests and found that I did not have intracranial
hypertension. Again I was disappointed in a non-diagnosis. But then he said the words that eventually changed my life for
the better: "But I know this guy... "
Dr. Bose referred me to Dr. Hamid Djalilian, a neurotologist at UCI. Dr. Bose said Dr. Djalilian, also a skull base surgeon, was really good at diagnosing
conditions that others could not. He was an answer finder.
Very discouraged, I almost didn't make an appointment.
What was he going to say that 7 other doctors hadn't already said? But finally I thought, what the hell...
I
made an appointment with Dr. Djalilian. It took a while to get in to see him, but he
looked at the same stack of MRIs and CT scans that all the other doctors had-- and saw something. By god he saw something.
He said it looked like I might have a tiny of malformation of the bone behind my ear; an anatomic plate defect. He ordered
another CT and MRI of the temporal bone and confirmed that I had a "left posterior fossa plate defect, with an arachnoid
granulation protruding through the left-sided tegmen mastoideum defect." Whew....
Essentially I had divot in
the skull bone on the inside that my brain covering was pushing out into and where extra veins had room to form and that could
lead to a cerebral spinal fluid (CSF) leak. Something that had probably always been there, I think, but that none of the
others doctors had seen, thought to look for, bothered to look for, or even knew what to look for (pick one....).
Dr. Djalilian was VERY cautious in stating this
was causing my PT. In fact, he said he did not guarantee it in any way. But PT or not, while not life-threatening, it was
a condition that needed to be corrected because of the possibility of a CSF leak leading to meningitis. And it was certainly
coincidental that it was only on my left side.
Dr. Djalilian formed a plan to correct this. I had a cranioplasty, mastoid obliteration, and mastoidectomy with abdominal fat
graft (please, take ALL you need!). Basically, he bored a hole in my skull bone, repaired the CSF leak, cauterizing some veins,
filling the hole with some muscle, bone wax and abdominal fat, and covered it with a small titanium patch. There's actually
a video of the surgery highlights on YouTube. Apparently it was a good thing I had this done as he discovered there was already
a small CSF leak.
I woke up after surgery with a small bald path behind my ear and a head bandage that makes me
look like an extra from MASH, but little pain other than being groggy. And silence. I heard the sounds one would hear in a
hospital. But inside my head, there was quiet. I almost cried. Whoo freakin Hoo!
As for the post op, here's the down side.
I spent one night in the hospital. The left side of my head felt very gurgly (if there is such a word), popping with a sort
of full or underwater feeling from the swelling and this subsided over the next couple weeks. No pain, just a weird feeling.
It's almost completely gone. There was little actual pain at the incision behind my ear (I had no stitches, they used that
skin glue stuff) but it was mild and quickly gone. The area felt numb mostly and this, too, has recently begun to subside.
They shaved only about an inch of hair behind my ear -- you can't even see it. I did experience some pain in my left jaw
when chewing if I opened my mouth too wide. Again, this has subsided with time. Every day gets a little better. I was
on antibiotics for 10 days (which frankly made me feel more wiped out than the surgery) and diamox for the swelling. They
gave me some vicodin but I didn't need it after the first couple days. I was back at work in six days. Right now I'm 40 days
post op and I'm feeling pretty dang good.
The upside: I have silence in my head. After eight years, no whooshing.
No swooshing. I would do the surgery again in a moment.
As anyone who has PT knows, the great problem is that
there is no one diagnosis, no one cause, no one cure. So my "fossa plate defect" may not be the cause of yours;
my solution may not be your solution. But it's something to ask your doctor about. If I can offer any advice, it's educate
yourself as much as you can about all of the possibilities, bypass your local otolaryngologist in favor of the otolaryngologist
department at a university/teaching hospital, where they are more likely to have actually heard of your condition. Refrain
from using the "tinnitus" word when discussing your condition with the booking clerk or sometimes even your doctor;
my experience was that the minute they hear that, they immediately assign you to the ringing-in-your-ears category and want
nothing to do with you. Just describe your symptoms.
“An End-of-Summer Ode to My A/C Unit,” by a Pulsatile Tinnitus Sufferer
Dear, dear friend:
Summer is almost over. Long days get shorter, cool breezes revisit, dry
air replaces the soupy muck until next spring.
Soon, I'll be turning you off, dear A/C unit
by my bed. Oh, that day I dread. No more cold white noise to drown out my whoosh at night.
Another whooshing summer. Gone. You know it and you show it: you're getting old (so am I, but
I digress).
Sure, you're loud and you rumble like a freight train. Unique! Antique! Your model generation
has long been out of stock, but your loyalty endures.
The young, brand new, sleek and quiet versions of you wait on store shelves. On sale.
Tempted? Me? Never! How could I say farewell to my loud whooshsaver, forever? You rid the air of humidity, hot air and... my whoosh!!
No sound machine rivals you, my
dear A/C! Soon, I'll be longing for nights of air-conditioned delight, with your LOUD whooshing hum that masks my own, to help me sleep.
So, as whooshers in
the southern hemisphere dust theirs off with delight, I say: So long. 'Til next year, dear A/C. You deserve
a break. And chances are I'll need you before next summer rolls in. Maybe even on a snowy evening, for a restful sleep, just like old times.
