Another Cured Whoosher: Sigmoid Sinus Diverticulum (SSD)
How about another Cured Whoosher story? This is Jennifer's story, about her eventual diagnosis and treatment for sigmoid
sinus diverticulum (SSD). She had a procedure over six months ago and is still whoosh-free.
Over the years we
have heard from a number of pulsatile tinnitus patients with similar symptoms and (eventually) this diagnosis. Be sure to see our Cured Whooshers page where you can read other SSD stories and find links to medical reports that you may share with your doctors. Additional
resources may be found at the bottom of this post.
Jennifer, thank you for sharing your story. It will
be added to our Cured Whooshers page. Enjoy the silence!
I wanted to share my story with all fellow “whooshers” to let you
know there is hope and silence out there!
My name is Jennifer, I’m 45 and living in northern Virginia.
This is my story...
About 5 years ago I started hearing a faint swishing noise in my left ear. I didn’t
think much about it as I only heard it every once in a while but I did mention the noise to my ENT doctor. He said they could
do more invasive tests to see what could be causing the problem but that it was probably a blood vessel that was very close
to my inner ear and what I was hearing was the blood rushing through the vein. At that time I didn’t want to pursue
the issue because it wasn’t really a bother to me.
So a couple of years went by and the sound of
the swishing was getting little louder and a little more bothersome. I definitely started noticing that the sound would get
much louder if I turned my head a certain way or if I bent over. I wanted to go back to my original ENT but he had since left
the area so I made an appointment with his replacement. I told him about the noise and the possible blood vessel situation
my first ENT had mentioned. The new guy didn’t seem too enthused about doing more intensive research and he poked and
prodded a bit and then said something like “well, you will probably just have to live with it, it’s a form of
tinnitus.” Ugh. Really? Ok, well, the noise isn’t THAT bad, so I guess I’ll live with it.
Fast forward to summer of 2013. Everyday I was hearing the swishing and it was so annoying! I discovered that
if I pressed on my neck under my ear the sound would diminish a bit. I soon found myself walking around constantly pressing
on my neck just so the swishing wouldn’t be SO loud. The noise was starting to have an impact on my daily life... I
would only use the phone on my right ear, I would have to watch TV with my head cocked to one side and there were nights when
trying to fall asleep seemed almost impossible with this crazy thing going on in my head! I knew it was time to try again
This time the ENT doctor I chose was highly recommended and very well respected with an office
close to our nation’s capitol. Surely he could help me. I mean he must have more answers than the small town ENT’s
I had been to in the past. So in September of 2013 I had my first appointment. Again I mentioned the blood vessel possibility
and he seemed quite receptive to running tests to help me find an answer. Great! So he did the usual poking and prodding,
gave me a hearing test (which I passed with no problem) and even scoped my inner ear with a tube that was inserted through
my nose. Not fun at all. But I was hopeful, hopeful he could see something that was causing the whooshing. The only thing
he discovered was that I had a very severe deviated septum. However, he did schedule a doppler reading of my carotid artery.
This I was happy about. I had done a bit of research and I knew this was a good first step in possibly finding an answer.
Of course the reading came back clear (which is actually good news) but at the time seemed so disappointing. He then mentioned
possibly scheduling an MRA (similar to an MRI that looks at your blood vessels.) Yes! This is what I need! Finally they will
be able to see if there is a blood vessel in my ear that is causing this insane sound happening in my head!
BUT, he only wanted to schedule the MRA after I had deviated septum surgery. What? Excuse me? I’m pretty sure
the noise in my ear has absolutely nothing to do with my crooked inner nose. But he was so insistent. He actually convinced
me the two issues might be related and he felt he should correct the known issue first then have the MRA to possibly see what
was causing the whooshing. I was so desperate to get answers that I agreed to the deviated septum surgery. I was put on the
schedule for the first week in January 2014. But then I went through the holidays feeling very apprehensive (I knew my deviated
septum surgery had nothing to do with the sound in my ear!) So, I called the ENT office and cancelled the surgery.
Then, I searched the Internet again for a better solution. That is when I found Whooshers.com Hallejuliah!!
I read over all the stories and finally felt that someone out there knew what I was going through.
name that came up in the miracle of solutions was Dr. David Eisenman, a neurotologist practicing in Baltimore, MD. Some people
had traveled across the county to see him and here he was less than 2 hours away from my home. I called his office the next
day and met him 10 days later. One of the best days of my life, seriously, he is wonderful!
had me diagnosed in 5 minutes and knew exactly what the next steps were we needed to take. I was scheduled for a special CT
scan, a scan that he has helped develop to look at specific sections of the skull and blood vessels. There were days
when I never thought I would get relief from the crazy sound in my head and then there it was: the diagnosis. Sigmoid Sinus
Diverticulum. Basically, I had a bulging blood vessel and the bulge had worn away the tiny bone by my ear and what I was hearing
was the blood rushing through my veins.
Dr. Eisenman let me know my options and I couldn’t get on
his surgery schedule fast enough. March 17, 2014. Now, I’m not Irish, but I’ve always loved St. Patrick’s
Day, and I will really have something to celebrate from here on out because that is the day that changed my life.
They went in, straightened out the blood vessel, then built the worn away bone back up with “bone cement.”
Dr. Eisenman and his team were amazing and everything went perfectly. I had to spend one night in the hospital, and I have
a scar behind my left ear. But I also have complete silence. COMPLETE SILENCE!
I’ve waited eight
months to share my story. Everything is still perfect and there are days on end when I never even think about my old
If you are suffering, please know there is help out there.
Another Cured Whoosher: Transverse Sinus Stenosis and Enlarged Arachnoid Granulation
Nothing makes me happier than to receive a personal story from another cured whoosher! I received this one recently from
a woman whom I will call "Jill." Her story is yet another example that many pulsatile tinnitus patients face
obstacles to proper evaluation and treatment. The writer is also very honest about the terrible - even suicidal - feelings
that some of us experience as a result of this rare symptom. On the brightest note, Jill shares an example of how persistence
really can pay off. Jill, good for you for being your best advocate! Your story will be posted along with many
others on our Cured Whooshers page. Thank you for sharing your experience, take care of yourself during this recovery, and ENJOY the SILENCE!
years, I’ve had this noise in my head. Loud. Whooshing. I heard a lot of doctors say, “Mm-hmm,” when I told
them I heard a whooshing in my ear. I was told I was anxious, depressed, and given Trazadone so I could sleep, told to see
a therapist (which I did), etc.
I don't remember a time when I couldn't hear the whooshing, but in the last several
years, it became unbearably loud or I became less able to withstand the relentlessness of it. The neurosurgeon doesn't think
that I was born with it. I'm not sure. It took a long time (years) for me to believe myself - that this was a real problem
that was causing me suffering. I'd say that overall, the most severe whooshing lasted for the last three years, but that's
also when I began seeking a solution so I think that my resistance and strength were waning.
I told my husband
that it sounded like a whooshing so he searched for that and found Whooshers.com. Knowing about the Whooshers.com site helped so much in my long search for a resolution.
drove me to tears sometimes. And, it drove me to have what I would call suicidal thoughts. It was deeply painful and because
I'm a mother and a teacher, I hesitate to write about this because of the effects that this knowledge could have on my daughter
(now grown) and on the children I teach. I do think that the truth is healing and so, in writing about these thoughts, I hope
that truth helps someone else. My whooshing was on the right side and was a 24/7/365 thing. Very loud. I teach kids so during
the day, when I was busy or the kids were noisy, I was ok. I spent a lot of time at noisy places - restaurants, cafes, roaring
rivers, you name it - wherever I could sit and focus on my work or have some relief. I could hear it in loud restaurants,
but it was more bearable.
Once, during an evening crying jag, I asked my husband if he could hear it. He
put his ear to my ear and he could hear it!
Objective Whooshing [Pulsatile] Tinnitus. I used these words
when I talked to doctors and nurses and I didn’t let them talk me out of it. I told every health care professional to
put their ear to mine, but they wouldn’t. They used stethoscopes. Most could not hear it using a stethoscope.
I talked to Dr. Halbach at UCSF in California who has had a great deal of success dealing with certain causes of whooshing.
He talked me through some evaluative “tests” – does the whooshing ever stop? Does it stop when you push
on your neck? Can you still hear it when you push on the vein behind your ear? He knew Dr. Warren at Oregon Health and Science
University. I jumped the insurance hoops and got an exam with him. My goal at that exam was to get Dr. Warren to hear the
whooshing. An intern came in first. The intern couldn’t hear it. A doctor walked into the room and I told him about
my goal. He put his stethoscope to my ear and pushed his chair back in awe of it. He heard it. He called other doctors in
so they could hear it, too.
The ENT ordered CT and MRI scans. The MRI showed narrowing of the vein on my right
side, but the cause was inconclusive so he refereed me to the neuroradiologist, Dr. Gary Nesbit. The angiogram didn’t
show anything new (or terrible – like aneurysm, etc.), but it confirmed that the original MRI picture held the most
likely answer to the whooshing: arachnoid granulation extended on the right side against the transverse sinus. The neurosurgeon
wouldn't go in without doing the angiogram because the MRI wasn't conclusive enough. It showed the narrowing, but it wasn't
clear why there was narrowing. He wanted to rule out aneurism, fistula, etc.
I was elated to have a diagnosis and
a solution. At first, I was worried about having an angiogram. My understanding was it was a risky procedure, but so was living
with the whooshing due to the extreme stress of it and the horrible effect it had on my sleep. I hadn't slept well in years.
Trazadone helped, but it wasn't a great solution. It was all worth the risk, but it was scary, too. I had the support of my
husband and daughter. They pushed me through some of these procedures when I was ready to give up. Whooshing, lack of sleep,
the relentlessness of it all wore me down in ways that are difficult to explain to someone unless they have experienced this
or something else that is chronic.
The angiogram was not fun at all. It was harder than the MRI (for the MRI,
ask for a mirror if you're claustrophobic and ask for music!). The angiogram is more invasive and strange things
happen to the brain. You're awake for the procedure, and the doctor [usually] goes into your artery through your hip. For
me it was really unpleasant, but I was on drugs that calmed me a bit. There were times when I saw lightning flashes and lots
of color combinations and it was a lot like a Pink Floyd laser light show I once went to, and once, my brain felt like it
was on fire. I looked at it as a psychedelic experience - one that I could have had if I'd ever done really hard drugs. But,
again, it was worth it. It also had to be done. It wasn't a choice if I wanted to find a solution.
In the end,
The amazing and wonderful staff at the Oregon Health and Sciences University performed an endovascular stenting and angioplasty
of the right transverse sinus. I showed up at 5:30 a.m. and had my in-patient procedure. When I woke up, someone asked me
how I was. I just smiled and kept smiling. I couldn't stop smiling, in fact. The sound was gone. I had silence. When my husband
came into the ICU, I had him listen and he couldn't hear the whooshing. He cried happy tears along with me. I recovered in
the ICU at OHSU and the people there were fantastic. I was released the next day after I slept (not perfectly because sleeping
in the ICU isn't easy, but I slept better than I had in years).
There were surgeons on the team who didn’t
understand why we were doing all of this – it’s only noise after all, they said. They are the ones who need to
hear the whooshing. If we can get doctors to listen with their ears rather than stethoscopes, they will hear it. Until that
happens, let them know that some doctors can hear it and some can’t. Make it a competition! Doctors thrive on that.
Make doctors hear your whooshing if at all possible.
I have no more whooshing. I’m so happy and relieved.
I don't like taking the blood thinners - Plavix and aspirin, but I will have to take the Plavix for six months. Blood thinners
are very important for this phase of my recovery, I am told. I don't like the bruising and the difficulty of healing from
small cuts, but it's all a very small price to pay for such a great reward. The puncture site at my hip took a little bit
of healing, but it has completely healed - it's been 3 weeks now. I have had tiny headaches from time to time and I never
suffered from them before. Again, small price to pay for such glorious silence. I’m really looking forward to decades
(hopefully) of life as a cured whoosher. I sleep!
I wish all good things for other whooshers. Don’t give
If It's September, It's Intracranial Hypertension (IH) Awareness Month!
Whooshers.com is a big supporter of all who raise awareness for intracranial hypertension (IH), a condition that impacts
many, many whooshers and doesn't get enough attention. Since September is IH Awareness Month, let's chat a minute about
IH, shall we?
According to the Intracranial Hypertension Research Foundation (IHRF), IH is the term for neurological disorders that result when cerebrospinal fluid (CSF) in the skull is too high. Whooshing
is sometimes the first and sole symptom of IH. There are different types of IH: Acute/Chronic; Idiopathic/Secondary - and
different people with even the very same diagnosis may experience IH very differently.
Like a lot of causes of pulsatile
tinnitus (and not unlike the symptom itself), IH has a bit of a PR problem. Not enough people know much about it, and medical
professionals aren't necessarily trained to detect its symptoms. It's one of those conditions that everyone has said
for years is "rare," but really, it may just be "rarely diagnosed." To make it more confusing,
IH has had a number of different names, including pseudotumor cerebri and benign intracranial hypertension.
This book was purchased in 2003 - even its title is outdated now! More organizations and support groups have since
been born and there are a lot of wonderful people raising awareness and support, for the condition and for the people enduring
the symptoms and finding their way to and through treatment.
But there's a lot left to be learned and shared. We've
heard from a number of whooshers who were diagnosed with IH, and while the term "cure" is unfortunately not a common
one associated with IH - not yet - the good news is once identified it is possible to find support and treatment. We've
posted quite a few Whoosher-IH stories, including this one. I encourage more IHers to share their stories with us.
If you don't know a lot about IH, one of the best
things you can do is read about IH Myths. For example, did you know that IH impacts MEN as well as women? It's true. Did you know that you don't need
to experience headaches or have vision problems to have IH? That's true, too. Very often, even if doctors are familiar
with IH, a patient will fall between the cracks because the myths - oh, the myths - keep many patients from receiving a proper
In its "Introduction," the (albeit outdated) book quotes Dr. C. Everett Koop, the former
U.S. Surgeon General. He said, "The best prescription is knowledge." I couldn't agree more.
Have Pulsatile Tinnitus? How To Get Your Doctor's Attention and Getting Beyond "Live With It"
Due to the fact that pulsatile tinnitus is a rare symptom, many of the emails I receive from patients go something like
"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.
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:
(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.)