About six months ago, I heard from Brad, a (now former) whoosher who told me he first visited this site just over two years ago - probably not long after I launched it.  Like most of us, he had searched for years for a diagnosis and a possible fix. He told me that his doctor had discovered the underlying cause of his pulsatile tinnitus: transverse sinus stenosis, which is a narrowing of a vein near the brain.  His doctors had suggested a procedure to correct it, he had it, and it seemed to have worked. 

Brad followed up with me recently with the great news that he was still living in silence - no more whooshing!  He wanted to share his story here to reach other whooshers, and I'm so glad he did.  

Transverse sinus stenosis is a relatively rare cause of pulsatile tinnitus that evades most of the normal diagnostic tests, probably because we're talking about a tiny vein that is simply too small for a lot of tests to detect.  I happen to be familiar with this cause because transverse sinus stenosis is the cause of my pulsatile tinnitus, too.  Like Brad's, mine was discovered via a cererbal angiogram, after many, many other tests that did not detect it.  I have met only a few other whooshers around the world with the same cause since I launched this site in 2009, and I haven't found a whole lot of information about this cause and its treatment as it pertains to the symptom of pulsatile tinnitus (and not something else).

There are quite a few medical reports about possible connections between transverse sinus stenosis and idiopathic intracranial hypertension (IIH), but not all patients with transverse sinus stenosis are also diagnosed with IIH, and vice versa. And it's important to note that not all IIH patients experience pulsatile tinnitus, although we have many whooshers in our network who are IIH'ers.  I've looked but have not found many medical reports regarding a case of transverse sinus stenosis in the absence of an IIH diagnosis, and remedy of the pulsatile tinnitus upon a procedure to fix the stenosis (as opposed to a procedure to remedy other symptoms of IIH). This may explain why I have not heard of many whooshers with this diagnosed cause and remedy, but I'm still looking! 

In the meantime, here is a link to the search results for "transverse sinus stenosis," for any of you who may be more curious about the diagnosis and procedures reported to have corrected it, so you may share and discuss some of those search results with your doctors.   

So back to the exciting news:

After some much needed recovery time and some gradual confidence that the whoosh really may be gone for good (which is a common stage I recently wrote about here on the site), Brad was kind enough to share his story, which I'm posting below. 

Thanks, Brad, for sharing your wonderful news and details that I know will help other Whooshers out there! I'm thrilled to share your story here and on our Cured Whooshers page, where there is a growing list of underlying causes of pulsatile tinnitus as well as medical reports and stories like this one about real people who find real silence. 

It's wonderful to hear more and more cases of ours being solved.  Like I always say, sharing our stories is the first step towards recovery! If you are a cured whoosher and would like to share your story (anonymously, if you prefer!), I'd love to hear from you. 

There are many possible underlying causes of pulsatile tinnitus; this story is about just one.  I encourage every pulsatile tinnitus patient to share the links to medical reports and abstracts (summaries) on this site with your doctors so that they may read and review them with you.

Here is Brad's story:

My first experience with PT came when I was 28 years old.  I noticed that when I was laying down to sleep I could hear an odd whooshing sound in my right ear.  It was different from the pulsing or pounding sound I could hear whenever I worked out or had an increase in blood pressure from exertion.  This was a whoosh; it reminded me of the sound you hear when placing a doppler over a blood vessel.  It didn't last long, and I was able to fall asleep without difficulty.  However, it seemed to happen every night, even when I laid on my right side when the pillow was covering that ear.  After a little time had a passed I also noticed that it happened when I bent over.  I wasn't sure what to make of it so I went to my general physician who referred me to an audiologist. 

I went in and had my hearing checked, but I had no hearing loss.  The audiologist told me there was nothing they could see that would cause the PT and that if it didn't disrupt my hearing I should be fine.  So I figured it wasn't anything to worry about and since it wasn't debilitating I decided to just try to ignore it. 

So two years went by and it was still just an annoying sound that I heard when I was in a quiet room trying to sleep.  It wasn't too distracting at that point so I just kept trying to ignore it.  At this point in my life I started graduate school, which increased the stress in my life.  I started to notice that the whooshing could be heard during the day when my stress level was elevated.  I asked a few physicians if they could think of anything that causes this and none really had much advice for me. 

After a few months the PT started to increase in frequency and volume, so I went to my new GP.  She noticed my blood pressure was high/normal.  She put me on a couple of anti-hypertensive medications and I noticed a decrease in the volume of my PT.  At that point I was pretty excited because the sound was again only audible in a quiet room and was totally manageable, in my opinion.  During this time I also noticed that I could make the sound completely go away when I pressed on my carotid artery, but this bit of information didn't seem to impress anyone else so I didn't think much else about it either.

Another year went by.  I graduated from grad school, moved back home and got good health insurance again.  I went to a new GP who referred me to a neuro-otologist (or neurotologist).  I thought to myself that this guy is an expert so he will figure out what is going on for sure.  I saw him once - he had me get an MRI and see another audiologist. When I went back to him to review the MRI he told me there was nothing visible on the MRI and the audiology exam was normal, so my PT is just something I am going to have to "live with."  I wasn't too excited about hearing this but since the sound was controlled with blood pressure medications I just accepted it and went home.

I suffered from daily headaches for about a year, around the time that I had to go on BP meds.  It wasn't debilitating but was annoying.  I had it when I woke up in the morning and it normally would go away with ibuprofen or tylenol.  It would come back again when the meds wore off and I would have to take some again.  I was under a tremendous amount of stress, so I related it to stress and my PT.  These headaches lasted for about a year and then eventually just went away.  I went headache-free for almost 4 years before my stent placement. 

Another year went by. My medications weren't working as great as they used to, and the volume of my PT was increasing.  I started to get stressed out and worried, so I asked my GP to refer me to someone else.  She sent me to a neurologist who specializes in tinnitus but not PT.  He ran a few tests in his office and sent me for another MRI but added a MRA and CTA.  He also sent me to another audiologist.  Well of course nothing showed up on any of these tests.  But he didn't give up -- instead, he sent me to a neurosurgeon who specializes in micro-vascular abnormalities.  That doctor decided to order a cerebral angiogram to look at the smaller vessels in my head.  I was positive at this point that he was going to have to see something. 

I had the angiogram and while I was waking up in recovery the neurosurgeon came in to provide me the results.  I was still groggy from the sedation but my wife was sitting next to me, so I figured one of us would remember the conversation.  Basically he told me that he saw a small stenosis (narrowing) in my venous sinus.  This is a vein that drains from the head into the jugular vein.  Even though he saw the stenosis he didn't try and open it up because he didn't know if it would be helpful.  He tells me that if my PT increases to come back and see him.  I missed that part of the conversation which ends up being important later. 

I went home thinking there wasn't anything he can do and my PT is here for life.  I was unhappy and I became a little depressed. 

The next year that went by was hell.  My PT became louder and I kept upping my blood pressure medications.  I was constantly occluding my carotid artery with my finger just so I could hear out of that ear.  As the year went by I sank deeper into a depression and I started to wonder if I could continue to do my job because I was constantly occluding my artery just to hear and I was so stressed out all the time.  I decided to go to an ENT to ask him about ablating the auditory nerve in my right ear, rendering me deaf in that ear, just so I don't have to hear it anymore.  I set a date to meet with him and waited.  During the waiting for that appointment I decided to go to the neurosurgeon again just to see if he had any other advise.  I'm so glad I went back. 

When I went to see the neurosurgeon he advised me that the angiogram the year before did show a stenosis and he could try and stent it open.  At this point I thought to myself, why didn't we do this last year?  If he had offered that then I would have said yes but I guess he didn't think my PT was very debilitating and didn't offer it. He could tell now that I was at the end of my rope and offered to do the procedure. 

The procedure required another cerebral angiogram followed by stent placement.  It was scheduled ASAP. I can't tell you how excited I was to have hope that it may work.  They were able to place a 4 cm stent in my right cerebral venous sinus and when I woke up there was finally silence.  No need to occlude my carotid, no need for fans to sleep.  It was awesome. 

After the stent was placed I had a daily headache for about 3 months.  My body had to adjust to having a foreign body.  It wasn't a bad headache and I was willing to just ignore it because the PT was gone.  Eventually my head got used to the stent and the headaches went away. 

It's now been 9 months. I'm off of blood thinners and had a repeat angiogram to make sure everything looked good and it did. 

I was lucky.  It took persistence on my part but I finally found someone who could diagnose my problem and fix it.  I feel blessed everyday now that my PT is gone.

My only advice for other whooshers is to keep searching for answers and for someone who wants to help you.  There are so many physicians who are ready to write you off but there *are* a few who really want to help.  The key is to find someone interested in helping.

I found Whooshers.com about 2 years before my procedure.  It was a great find.  I was so happy to actually put a name to what I was hearing.  No one had diagnosed it as PT; I did that on my own and then tailored my search based on that for doctors.  I had no one to talk to who had similar symptoms as me.  It was exciting for me to know I wasn't alone and that it had a name.

From time to time - and more and more often, now - I receive an email from a Whoosher with a subject like, "Whoosher Cured!" or "Good News!"  Typically, these emails are written by Whooshers just after enduring the procedure that doctors said should correct their underlying pulsatile tinnitus cause.

There is a common thread among these folks: after months (sometimes years or decades) of "live with it" and "unremarkable" test results, their individual underlying causes were properly identified and diagnosed. Virtually all of them praise their doctors, the doctors who found answers and provided hope after (in most cases) so many others did not.

I'm grateful that these Whooshers get and often stay in touch with me, and I know that conveying their stories - while respecting their privacy, of course - gives other Whooshers hope.  Many of their stories are shared, along with corresponding medical reports, on our Cured Whooshers page.  

The cause of my pulsatile tinnitus was difficult to find.  It isn't so for each case, but it often is.  We all search for a diagnosis with such persistence that we may forget our true aim is a correction of - or at least attention to - the underlying cause. 

Recently, it occured to me that we don't talk a lot about this post-diagnosis stage: the stage after a doctor says, "I know what's causing your whoosh," but before we feel like ourselves again.  There are Whooshers who receive a diagnosis but then have a long road ahead toward a correction, for a variety of reasons (I am in this group).  I call it Whoosher limbo.  But even for those with an appointment set for a procedure and a correction on the horizon or even in the near past, the time after diagnosis can be, well, weird. 

Earlier this year, one Whoosher told me she was undergoing a procedure to correct the underlying cause of her whoosh, very soon after doctors determined the cause.  I kept my fingers crossed that everything would go alright.  A day or two later, she wrote to tell me that indeed the procedure went well and she was experiencing silence.  Silence!  No more whooshing! She was recovering, but she was happy and grateful for her medical team.

Yet, she conveyed - with a bit of guilt - that even after her proper diagnosis and then the procedure, her nerves weren't calm.  The reason: fear that the whooshing might come back.  Disbelief that the procedure she waited for really worked. I think she felt a little bad conveying that, since silence was the main goal, after all!  But when you've been whooshing even a short while for every second of every day, it must be tough to truly enjoy the silence without worrying it may only be temporary.  

When anyone or anything abandons us - even silence - it takes a while to trust it again when it returns.

Six months went by, and then it was time for her followup appointment.  More anxiety, this time because a medical test would be performed to see if the source of her pulsatile tinnitus was rearing its head again.  But, everything looked good, her doctors said.

She relayed her new relief; it was palpable.  Now she's really in the homestretch. 

The adjustment to a silent world takes a while to get into full gear.  The period after a procedure to correct pulsatile tinnitus must be a difficult one.  On one hand, you whoosh no more, which is great (and quiet), but the doubt that it's gone for good may be like a self-fulfilling prophecy that can't be avoided.  After all, when you're told for so long that your symptom is "rare" and "weird" and it evades doctors' understanding, how are you to trust that anyone really knows what will happen?  Only time will tell.  The ironic focus shifts from "whoosh-whoosh" to "tick-tock."

And there is anxiety, too, for those of us who have a diagnosis but no clear remedy (not yet, anyway).

We sometimes focus so much on how to find a diagnosis and a cure or fix, that we don't consider what to expect after and even way after a diagnosis.  I think we can learn a lot from each stage.  

Around the same time I heard my Whoosher friend's inspiring news, I discovered a series by Lisa Sanders in the Health Section of The New York Times called, "Think Like a Doctor," in which the writer poses a medical mystery to readers to see if they can solve it.  Readers submit their ideas and the "Correct Diagnosis" is posted later, including how the diagnosis (by real doctors) was made, details about the patient's experience leading up to that diagnosis, and tests that were performed to evaluate the symptoms. The diagnosis is also discussed and analyzed alongside the patient's story: there's an ackowledgement of before and after.

I like the series because it cleverly shows how much can be learned from an individual's experience, not just the headline diagnosis or short blurb describing the case in medical terms. 

Sure, with the benefit of hindsight, we can talk and talk about where doctors went wrong or why they went wrong.  But once a diagnosis is made, the details of how the patient's world was made right and the ups and downs involved in the process of recovery are usually not stressed.  Why not? This is the good stuff!

By the way, it's interesting to see how many readers submit opinions that are close to the actual diagnosis!  It's even more interesting to see how DEVOTED the readers are and how carefully they assess each symptom, each detail of the patient's story, and with empathy that you can feel when you read what they've written. They show how it could benefit doctors to think like patients! 

Let me repeat what I truly believe: we need doctors.  That has always been my philosophy, and I specifically discourage self-diagnosis or the diagnosis of others online, especially since pulsatile tinnitus may be a symptom and a signal of a medical condition that requires quick and experienced care.  But there is something to be said for sharing our stories online and discussing ideas, because we tend to convey the emotions surrounding what we experience, which may help us cope and find understanding. 

I encourage every Whooshers.com reader to share their story (even anonymously!) for two main reasons:

1) When you're dealing with something wacky like pulsatile tinnitus, it helps to know you're not alone, and

2) You never know how your story - our stories - may help someone else.

The most recent "Think Like a Doctor" segment focused a lot on the doctor-patient relationship post-diagnosis.  Because, let's face it, once you have a diagnosis, you're at halftime; the rest of the "game" is still on the line, and sometimes it can be more grueling than the first half.

Once you've made it to halftime, you have some validation that you've played a decent game, you can make sense of what worked and what didn't, and then you can learn from the experience to ensure an even better second half.  As a patient, it is this period - the second half - when it's perhaps most important to have good communication and an understanding of what you're dealing with. You need a good coach.  Until we fully understand the details of the underlying cause, and we're sure the whoosh is gone for good, our doctors should remain engaged and help us understand what we've been through - what we're going through-.  Even when the whoosh is gone, the game isn't truly over until we achieve this understanding.

There are some whooshers who get a diagnosis without a clear path for a cure or fix.  Others are told, well, the cause could be one of a variety of causes, and we can try X, Y or Z to treat it, but there's no guarantee any will work.  There are others who have doctors who see things on diagnostic films, only to have another doctor look at the same films and say they don't see anything there.  And even if you're a whoosher whose doctor isolates a cause and a remedy, and the remedy works, it still takes time and support to say good riddens! to this crazy symptom many of us were once told would never - could never - go away.

At the end of the latest "Think Like a Doctor" story, the author made a profound point:

"This case is a reminder of an important precept in medicine: that a diagnosis isn’t really final until the whole thing makes sense ­to the patient as well as to the doctor. That’s the real art of diagnosis, and an essential part of the cure."

My Whoosher friend has another appointment soon to review her case with her doctors and to, once again, see if they and she can make sense of all she's been through.  After all, doctors are our coaches in this game we play together.  I want her to know that I think she's played a good game.  Like most pulsatile tinnitus matches, this one remains in overtime, but I'll never stop cheering them on!

-WhooshEr

Source: "Think Like a Doctor: The Right Test Solved!," Lisa Sanders, M.D., The New York Times, October 27, 2011.

My whooshing is subjective.  76%  (76 votes)

My whooshing is objective.  15%  (15 votes) 

I'm not sure.  8%  (8 votes) 

Other:  1%  (1 votes)

Total Votes: 100

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