Another Pulsatile Tinnitus Cause & Solutions: Sigmoid Sinus Diverticulum and Dehiscence
Sigmoid sinus diverticulum is a cause of pulsatile tinnitus that we have already explored here and here, but lately I have heard some very promising news from both patients and doctors about this cause and possible solutions
that I want to share.
In this recent study (the link is to the abstract/summary, so ask your doctors to access the full report), Dr. Eisenman in Baltimore, Maryland
indicates that surgical intervention of pulsatile tinnitus (also called pulse-synchronous tinnitus) may be highly successful.
This report describes 13 patients, all of whom experienced pulsatile tinnitus as a result of sigmoid sinus diverticulum, and
all of whom reported no more whooshing after surgery. That's 13 Cured Whooshers, folks!
And there may be additional
options for sigmoid sinus diverticulum patients to consider. Like the one in this study, also published recently.
Doctors YH Park and HJ Kwon in Korea indicate in this study that an embolization procedure corrected this 31-year old patient's pulsatile tinnitus symptom.
Interesting,
too, is that the diagnosis of the same cause was determined via different means for different patients. It appears that
CT scans (CTA/CTV) as well as cerebral angiograms were the tools used to diagnose the same cause. From the limited details
provided in the summaries, it seems that a CT scan is often done first, presumably because it is a less invasive test than
a cerebral angiogram, and then the angiogram may be done to confirm the diagnosis and (if this method is chosen) complete
the embolization process. Sometimes the diagnosis and treatment may be done in a single procedure (as was the case in the
second study above). It depends on the precise diagnosis, cause, the doctor's insight and the patient's educated understanding
of his or her options. That's why I think reading these reports and reviewing them with our doctors, so they may further
explain their complexities, is so important.
What we already know is that there are many possible cause of pulsatile
tinnitus. Each cause is different, and these many reports of patients with this particular cause indicate that indeed
two people with the same underlying cause may undergo different procedures to diagnose it and to correct it, depending
on factors such as medical history, individual circumstances and doctors' inclinations. Please discuss and review all
tests and options for correction, including their risks/benefits, with your doctors to determine if this is a possible cause
to look into and, if so, how it may be determined and corrected.
So we end the year and begin a new one with
stories of 14 Cured Whooshers! The second study above indicated that this cause is rare, which may very well be true,
although I have heard personally from several more patients in recent months with the same cause and positive results.
Maybe instead of "rare," the condition is better described as "rarely diagnosed," as is the case with
many other causes of pulsatile tinnitus. Perhaps the research is picking up regarding this cause, and that's nice to
know!
If you are a patient with sigmoid sinus diverticulum and/or dehiscence, I'd love to hear from you. Doctors
indicate that the subtleties of this cause can be -and often are- easily missed on films, so it's very important to see a
doctor who is familiar with this cause and the medical research, much of which is recent. After all, the success of
a diagnostic test depends on the cause(s) it is designed to detect ALONG WITH the eyes looking at the films.
These
two new reports will be added to the Cured Whooshers page. Hooray for more cured whooshers and the doctors who have gone to great lengths to help them!
If you're a Whoosher, here are some ideas --products and gestures-- for your holiday wish list. And if you aren't
a Whoosher but you know one, take a look at the list of Whoosher-Wants!
Several Whooshers contributed ideas
and feedback for this post, so thank you! Please free free to add more to the "Comments" section at
the end of this post.
Happy Holidays!!
10. A Good Pair Of Earplugs
Sometimes when an earplug is placed in the ear, the sound
of the whoosh subsides. This is especially helpful when trying to get to sleep or while reading. Ear muffs may work,
too!
9. A White Noise Machine, NOT A "Sound" Machine
White noise is often the
best noise to mask the pulsing sound of pulsatile tinnitus, because it provides a steady sound that masks the pulsing rhythm.
For many of us, it is the rhythm of pulsatile tinnitus that bothers us even more than the volume of the sound.
As one of our Whooshers put it, the goal is a "soft hum."
Another great option is a white noise audio file
(click here to download one for free!) that can be played on an iPod, iPhone, or MP3 player. Help your Whoosher download and play the audio file.
Sound machines that play animal sounds (crickets, frogs, etc.) or ocean sounds are not usually helpful because those
are rhythmic sounds that compete with our whooshing sound, so please don't buy us one of those!
A great product that provides a method for listening to white noise (or any other sound/music of choice) while
comfortably fitted around your head. I like this product best for listening to white noise while sleeping. It's a smart
alternative to a sound pillow. Here is a link to the Whooshers.com review.
7. A Whooshers.com T-Shirt
Increase pulsatile tinnitus awareness while wearing this comfortable shirt! (It's too late to order for Christmas 2011, but if you're willing to wait until the beginning of Jan 2012 we'll have more
available then!)
6. A Luxurious Bubble Bath
Some Whooshers report finding relief
when their heads are underwater. Steady water flowing, in the shower or bath, also sometimes masks the whoosh.
This great suggestion is from a fellow Whoosher: Fill the bath with bubbles, sink your head in the bubbles and the popping
sometimes drowns the whooshing.
5. Turn Up The TV When We Ask You To, And Don't Keep Asking Why
It
sounds like a small thing, but it's not.
4. Accompany Us To Doctors' Appointments
We may
not ask you to, but most of us appreciate the company. You may even be able to help organize medical bills, papers,
etc.
3. Ask Us How We're Doing
Pulsatile tinnitus can be a very isolating symptom,
especially since it is not visible. It is easy to forget that someone suffers from it, and how much. It's probably
not a good idea for us to dwell on it too much, but asking us once in a while how we're doing and really listening to our
answer helps us cope.If your Whoosher had a doctor's appointment, ask how it went.
Encourage your Whoosher to try to find an audio file that sounds like the whoosh s/he hears, so you can listen to it and understand and bit more what it sounds like (and how annoying it is!).
2. Relieve Us Of One Stressful Chore A Day
For many of us, an increase in stress
can increase the intensity of the whoosh. By taking something off your Whoosher's plate you could really help him/her
cope.
1. Listen And Learn
The best thing a Whoosher can receive is comfort that
those around us try to understand this unusual symptom we deal with and how it affects us. Listen and learn more about
pulsatile tinnitus on Whooshers.com. Understand that pulsatile tinnitus is NOT regular tinnitus. It is a rare symptom. Participate
with us on Whoosher Wednesdays and help our community get more attention and support!
Another Possible Pulsatile Tinnitus Cause & Another Cured Whoosher: Fibromuscular Dysplasia (FMD)
Another whoosher's underlying cause has been diagnosed and treated. Yep, another Cured Whoosher! Her name is Karen, and her story of challenges and hope was highlighted recently in an extraordinary article in The Washington Post. Karen reached out to me recently, and I'm so glad she did. She provided Whooshers.com with more whooshing details
at the bottom of this post, so be sure to read all the way to the end!
The cause of Karen's pulsatile tinnitus is Fibromuscular
Dysplasia (FMD).
According to the Fibromuscular Dysplasia Society of America (FMDSA), FMD is a "disease [that] causes one or more arteries in the body to have abnormal cell development in the artery
wall." Most of those affected with FMD are women. There is no cure for FMD, but there is treatment. Also,
"Many people with FMD do not have any symptoms or signs on physical examination and are diagnosed by accident during
a radiology scan for another problem."
For FMDSA's thorough information page, including symptoms, causes and treatments,
click here. FMDSA is a non-profit organization of wonderful people that work tirelessly to increase awareness of the disease.
They have an impressive and growing network of doctors and patients that band together to help people who would otherwise
feel isolated.
Before I tell you more about Karen's story, I have to share a little side story:
I learned
about FMD a few years ago upon receiving an email from Tom Burton, a writer at The Wall Street Journal about an article
he had just published. Mr. Burton's article, "The 'Rare' Disease That Isn't," and the accompanying video presented what I thought was an exceptional insight into FMD.
The thing was, Mr. Burton
contacted me only a few hours after I launched Whooshers.com, before the word had gotten out yet that Whooshers.com
was up and running. How did he find it, and so quickly? I hadn't even told my family I'd launched the site yet.
I wasn't sure if anyone would ever find it, much less a reporter. What I didn't know then was that the email from Mr.
Burton about FMD began what would be a steady stream of emails about possible and "rare" or "rarely diagnosed"
causes of pulsatile tinnitus.
Throughout Mr. Burton's piece are references to the "whooshing" and "swishing"
and "swooshing" sound experienced by many FMD patients. In the video, you can even HEAR one patient's whoosh! Mr. Burton recognized that the symptom that was the topic of Whooshers.com
could be a symptom of FMD, and I'm very glad he gave me the heads up so I could put up links to his piece and the FMDSA
resources to share with you all.
I still don't know how Mr. Burton found me, but I was very intrigued by his message
and the link to his article. Also? I must add that I was a bit freaked out because the story indicated that FMD
can be fatal if not properly identified and treated. So, I thought, why wasn't the possibility of FMD even mentioned to me
before by my doctors?
By the time I read Mr. Burton's story, I had several diagnostic tests done, but I hadn't
yet been checked out for FMD, which, according to the article and FMDSA, may affect far more people than once thought.
Sometimes pulsatile tinnitus is the only symptom of FMD, and, even in cases of FMD, pulsatile tinnitus is a symptom that
is often disregarded.
I made an appointment with a cardiologist and had some fairly straightforward tests to
rule out FMD. The thing is, your doctor needs to be familiar with characteristics and details of FMD to detect FMD,
and few are. If you experience some of the symptoms of FMD check out the resources at the end of this post and discuss
them with your doctors. Also, FMDSA has many links to medical reports that your doctor can read if s/he is not familiar with
the disease, and they have information about doctors who are familiar with FMD.
While there is no cure for
FMD, it may in many cases be treatable with medication and/or medical procedures. Sometimes, if the FMD patient experiences
pulsatile tinnitus, the treatment may even make the whooshing go away.
Which brings me to Karen, an FMD patient
and Cured Whoosher. Among other harrowing symptoms, page two of the article in The Washington Post reveals that she experienced pulsatile tinnitus.
UNFORTUNATELY (this drives me bonkers) for us, the writer
of the piece does not use the term "pulsatile tinnitus," however Karen described the symptom as well as she could
have: loud pounding in her ear, which sounded like a heartbeat; whooshing sound. An ear, nose and throat (ENT) specialist's
response to this symptom was, "Everyone can hear their heartbeat."
I know a LOT of you have heard that
same response. Karen says she was also told to lose weight to stop the whooshing, which is another recommendation that many whooshers receive, often without a clear and convincing reason that doing so may
remedy the problem. In fact, many people with FMD are in tip-top physical shape and exercise regularly. Weight is sometimes
a factor, but it depends on the cause.
But Karen didn't hear a sound that "everyone can hear," nor did she
need to lose weight to stop her symptom. She had FMD, which was misdiagnosed for too long and required treatment.
She kept searching and eventually found answers. Her treatment continues and her whooshing is GONE.
I'm grateful
for TheWashington Post article and The Wall Street Journal article, but *why oh why* isn't the
"whooshing" called by its name: PULSATILE TINNITUS? There have been so many missed opportunities
to expose our symptom, in articles published worldwide, like this one that was highlighted recently on Whooshers.com and papers worldwide. They don't mention the term pulsatile tinnitus!?!
While the symptom is described very well - we even hear it in the video I referenced above - not referring to it
by its (bad, but we'll take it) name is a BIG problem when it comes to diagnosis and treatment. NOT everyone experiences
pulsatile tinnitus; it is a rare symptom that warrants medical evaluation. FMD is just one of many, many possible causes of
pulsatile tinnitus, and the word MUST start getting out that it's a real symptom with a real name.
But I guess, for now, we'll take whatever exposure we can get. Today I'm glad to report that we have yet another
Cured Whoosher! Karen's story will be added to the growing list of others. It gives us all hope. Hope!
And below, in
her own words, Karen shares her story in more detail as it pertains to the whooshing.
Karen, thanks for sharing
your story with us and with The Washington Post! Your effort to increase awareness about FMD and pulsatile
tinnitus will no doubt help many people! I'm sure it already has.
Here is Karen's story for Whooshers.com:
I have had pulsatile tinnitus (PT) probably forever. I did not know what is was called until it finally
went away! Here is my story.
I first became aware of my PT (and concerned about it) some
time in my 30's. I had always heard my heart beat in my ear so I thought every one must hear it. I
called it "pounding" and I would tell people and physicians that I would have a pounding headache and the pounding
would sound like my heart beat in my ears. I recall feeling dizzy with the pounding. It was whooshing - and perhaps
that would have been a better description, but I called it "pounding." I was becoming more and more dizzy
with terrible migraine headaches.
The whooshing (pounding) would come and go but I would be aware of it
when lying down, or turning my head to the side. During those years I was taking many medicines that would either increase
heart rate, or increase blood pressure - but I was unaware that the medicines I was taking were excessive and combined dangerously.
I actually thought every one had whooshing in their head and was told on one occasion by a Neuro ENT that every one could
hear their heartbeat in their ear. I went to see him but he ended up ruling out vertigo and bad visual ocular reflexes,
as I felt the dizziness and pounding in my ears when I moved my eyes as well.
Years passed and I became used
to the pounding. It negatively impacted my sleep, my attention and ability to focus. When I became pregnant with my
first child at age 42 the whooshing increased. I thought it was just the increased cardiac demand that the increased
weight had on me. And by the way, I gained too much weight and did so very fast. I was retaining fluid; everyone
around me, including doctors, told me I should be swollen and bloated - little did I know that I was more bloated than I should
be. I finally developed pregnancy-induced hypertension with fear of developing pre-eclampsia. I was sent immediately
from the OB/GYN to the ER thinking I'd have to deliver prematurely, but luckily I was put on hospital bed rest until the baby
was big enough to come out safely. My blood pressure was dangerously high but maintained below 150/90 with no medicine.
I ended up losing 20 pounds of fluid in those last few weeks. The whooshing persisted - even louder than before - but was
the last thing on my mind - I had long since stopped telling doctors about it.
When I delivered I thought
my blood pressure would resume to normal but it did not. I was determined to figure it out and had researched in PubMed about hemangiomas which I had developed on my finger. I learned about a case in which the woman had hemangiomas during
pregnancy on her hand and her kidney causing hypertension. I requested a scan of my kidneys and the dopplers detected stenosis
in one or more vessels. My primary doctor said it could be due to fibromuscular dysplasia (FMD). I instantly read
up on the condition and sought support through a patient group called FMDSA. When I got the diagnosis it was determined to be in my kidneys and in my internal carotid arteries. My FMD specialist,
Dr. Jeffrey Olin, said the tortuosity in the internal carotids as it passed by my ears was causing the whooshing. He could
hear it through his stethoscope. And the increased velocity of blood flow through the twists in the vessels caused the sound
(bruit).
I had an angioplasty of my renal arteries, and since then I have been treated by an angiotensin
II receptor blocker medicine for my renovascular hypertension. My blood pressure is now well below 120/70 all the time,
and I no longer get the whooshing. I am not sure if that is due to the lower blood pressure or the fact that the medicine
relaxes smooth muscle found in arteries. But I only get the whooshing now on a rare occasion if I turn my head far extreme
to the side and hold it.
I guess my advice for patients who hear the whooshing is: get your doctor to listen
with the stethoscope for the bruit, see a vascular medicine specialist and consider getting a doppler all the way up along
the carotids to where they divide to form the internal carotids, and check your blood pressure during the day in various conditions
or positions. Second and third opinions never hurt either.
