When I learned what "regular" tinnitus was, I discovered long, impressive lists of famous people who suffer from tinnitus.  Or, as Wikipedia puts it, "notable individuals" with tinnitus.  According to these lists, Bono, Pete Townshend, Ludwig van Beethoven, Tony Randall, David Letterman and many others suffer from regular tinnitus.

But what about a list of famous pulsatile tinnitus sufferers? 

Before I knew I had pulsatile tinnitus, several doctors told me (mistakenly) that I had "tinnitus."  Later, I learned that they were wrong.  And over the last couple years, I've learned that I am not alone in this initial diagnosis snafu.  I hear from people, almost on a daily basis on our Facebook group page or via email, who tell me they had no idea that there was even a type of tinnitus called pulsatile tinnitus before they found Whooshers.com.  

A recent Whooshers.com poll revealed the same: most of us had no idea what pulsatile tinnitus was when we began experiencing the symptoms.

Worse, for many of us, neither did our doctors.  

So, since famous people are real people, too, I have to wonder:

Are there any famous "tinnitus" sufferers out there who actually --and maybe unknowingly-- suffer from pulsatile tinnitus?

It's not such a crazy assumption, right?  Regular tinnitus is very common, so I expect that most famous people on the lists above actually do have regular tinnitus, especially noise-induced tinnitus for the many musicians and actors on the list. But there may be one or a few who have pulsatile tinnitus, right?  

Actually, we know one actor-whoosher because he has told his story!  A couple of years ago, we found this piece titled, "How I Struggled With Tinnitus," about actor Graham Cole, from the UK.   In the very first paragraph, Mr. Cole describes the sound as: "a persistent, rhythmic and increasingly loud 'whooshing' sound in his ears." He goes on to describe the procedure he had to correct it, as well as the effects of the entire experience on his work, relationships, and his life overall. 

Unfortunately for us, the words "PULSATILE TINNITUS" don't appear until paragraph TWENTY.  No pulsatile tinnitus in the title, no pulsatile tinnitus in the conclusion.  Just a brief mention in the middle of piece. 

Mr. Cole suffered from both pulsatile tinnitus and regular tinnitus. The story details how his pulsatile tinnitus was corrected via surgery.  

I'm very happy for Mr. Cole that his doctors recognized the difference between pulsatile tinnitus and regular tinnitus.  But the tone of the piece, while acknowledging that pulsatile tinnitus is rare, is, unfortunately for us, written much like every other regular tinnitus story.  It does not do enough to distinguish the two very different types of tinnitus.  Readers around the world read this piece with "tinnitus" in the title, combined with the conflicting (but real) life story about a pulsatile tinnitus whoosher whooshing, and think "hey I have regular tinnitus," when it's more likely that, if they share the same whooshing symptom, they have PULSATILE TINNITUS. The story didn't do much good to promote pulsatile tinnitus awareness.

Newspapers and magazines are not alone in leaving out the important word "pulsatile." While there is an increasing number of medical reports about "Cured Whooshers," some still do not refer to the whooshing sound that is in perfect sync with the heart rate as "pulsatile tinnitus" or "pulse-synchronous tinnitus."  Most of them do, but it is very frustrating to read one that doesn't. 

Words MATTER.  

And PULSATILE tinnitus needs and deserves more advocacy.  As long as pulsatile tinnitus has the word "tinnitus" in its name, we should receive more help and attention from "tinnitus" associations, advocacy groups, medical institutions and the journalists who cover "tinnitus" stories and medical advances.

So here's my pitch:

Dear Mr. Cole and all the other tinnitus sufferers out there --current or cured!-- who happen to be a) living, b) "notable," and c) famous:

DO YOU WHOOSH??

If the sound you hear is in sync with your heart rate you may have PULSATILE tinnitus.  For more information, please spend some time reviewing Whooshers.com and give me a buzz (or a whoosh) at whooshers@gmail.com. 

If you are famous and whooshing, Whooshers.com could use your help. Our growing network of pulsatile tinnitus patients AND doctors around the world would greatly appreciate your voice and face.  Plus, we have a lot of support, success stories and increased and exciting momentum to make pulsatile tinnitus and its many possible underlying causes more known to patients and the international medical communities that serve them. 

We have the drive and the cause.  We could use a famous face.  

Because pulsatile tinnitus sufferers deserve advocacy, too. 

-WhooshEr

So listen up, everybody.  When "M" joined our (very active!) Pulsatile Tinnitus Support group page on Facebook some time ago, she had already --like many of us-- faced some pretty tough challenges in her quest for a proper diagnosis.  I'm happy to share that she has had the underlying cause of her pulsatile tinnitus identified and officially diagnosed: dural arteriovenous fistula.  She recently had a successful medical procedure to correct it, and she's doing great... her whooshing is GONE! 

M is another CURED WHOOSHER!

She was kind enough to write a detailed account of her journey, and I couldn't be happier to post it here and to our Cured Whooshers page, where you and your doctors can review some of the many, many possible AND TREATABLE underlying causes of pulsatile tinnitus.

M, thank you for sharing your experience. It brings us all hope and inspiration. Enjoy the silence!

I encourage everyone to continue sharing your stories.  I can't say it enough: sharing our stories really is the first step toward recovery.

For more information about dural arteriovenous fistulas, see this information page from Neuroangio.org and this one from MayoClinic.org.

Please leave comments below!

-WhooshEr

Here is M’s story…

My whooshing began in December of 2010. I was lying in bed and realized that I kept hearing this strange noise. I actually thought it was the house making noise. A few days later, I was working quietly in my office and realized I was hearing the same noise, and it seemed to be in my head. I thought it was stress, so I turned on some music. A few days later, I also discovered another bad symptom. I was lying on the couch watching TV, and turned to lie on my left side with the pillow bunched up under my head. The pillow pushing against the area behind my left ear (mastoid area) sent me into a severe dizzy spell.

I decided to go to my doctor. He sent me to an ENT. The ENT spent about 5 minutes with me. He looked in my ears, down my throat, and up my nose, and told me I was fine. I told him my symptoms again. I told him about the whooshing, which I now know has a name—pulsatile tinnitus. I told him that I would get dizzy if I pressed on that left mastoid area. I also told him the PT would stop when I pressed on this area. He told me that he was 99% sure nothing was wrong with me, but I he would write me orders for MRIs and MRAs if I wanted them. I decided I didn’t like the doctor, and I also decided I didn’t want to be the 1%, so I had these tests done. The radiologist who read them called them normal and unremarkable. The ENT wrote a condescending letter to my primary care doctor, stating that he knew I was suffering from anxiety and that I should be reassured that my carotid artery just runs close to the ear.

I began what would become an OCD—Googling every symptom, every term, everything I could think of. I made myself an anxious wreck. I found a PT support group in my area and went to meetings. I continued to collect information. I went to another ENT—still nothing. I went to another ENT, this time at an actual ear institute. They should know better, right? Wrong. Same short exam. Then that ENT told me my MRI looked fine, but he didn’t know how to read the MRA (at least he was honest.) He thought it might be some sort of nerve spasm and actually suggested that he could cure me by injecting the area w/ some sort of mixture of botox and a steroid (what?) However, he wanted me to get a cerebral angiogram first to make sure everything was okay. I heard cerebral angiogram and burst into tears and ran out of the office. I decided not to get an invasive test like that done until I had exhausted all of my non-invasive options. I went to a neurologist. He ordered an MRV and then a CT scan of my head. Normal and unremarkable—words I was beginning to despise. The neurologist tried to help me w/ the Epley maneuver—no dice. I know he was trying. After 2 visits, he referred me to another ENT. I was skeptical, but I also had nowhere to turn. I took the referral and made the appointment.

It is now the end of March 2011. Figuring this ENT appointment would be as futile as all my others, I brought all of my imaging CDs, but I did not bring all of my printed records. Why waste more time and paper? The doctor came in and was kind. He then gave me the most thorough exam of any of the ENT doctors. He used a microscope to look in my ears. He tested my blood pressure when I was sitting and then tested it again when I was standing. He had special goggles for me to put on. He then asked me to again point to the spot in question—the area that was making me dizzy when pressed, the area that I said had a very strong pulsing. He held a stethoscope to it and stopped. He was quiet, and then he said three words which would change the course of everything.

He said, “I hear it.”

I started crying. I was finally acknowledged. He told me that I may be a PT sufferer he could help. He asked me to leave my imaging CDs and asked me to drop off my records. Two days later he called me to tell me that he had consulted with a neurointerventional radiologist (NIR) at the hospital. He said that the NIR found the source of my problem—a fistula. He told me that I also had a clot. He told me that I needed to make an appointment to see the NIR. I was so happy that someone was actually taking a true interest in helping me, but now I was in a true state of panic because I all I heard from that conversation was, “clot.”

Thankfully, I was able to see the NIR the next day. (I’m still just thinking, “Clot.”) He was kind and greeted me warmly. He said that he was very interested in my case. He had the imaging from my MRA on the screen (the same MRA that I had back in January that had been “normal and unremarkable.” He pointed out an area on the MRA and said, “This is your sigmoid sinus.” (It looks like a blob to me.) He points at something in the blobby area and says, “Right here, you had a clot.” (Clot, clot, clot…) He continues and points to something that looks like a straggling piece of spaghetti, and says, “This is a dural arteriovenous fistula. It formed because you had this clot. The clot turned to scar tissue, and the blood wanted to find a new path, so it created this fistula.” I ask about the clot. He tells me that the clot is old and no longer anything to worry about. He says that I am a very lucky girl that the clot formed in my sigmoid sinus rather than one of the other sinuses, as I would most likely have had a stroke. I’m speechless—I’m only 38, and other than this, I’ve never had any health issues. I asked him why I had a clot form. He tells me it could be one of three things: 1. A blood clotting disorder—genetic or otherwise; 2. Dehydration combined w/ my use of oral contraceptives; 3. An ear infection that got out of control. (I don’t remember any ear infections, but I know sometimes the symptoms aren’t always severe.) He tells me that I will need to undergo a cerebral angiogram to determine the level of the fistula. He needs to see if it is low-grade (the blood is coming from the brain) or high-grade (the blood is feeding the brain, and the fistula would have a high chance of hemorrhaging.) He thinks it is low-grade. He has to be sure though. I try to take it all in. I respond quietly and say that I will move forward with the angio. In the meantime, I undergo blood tests with a hematologist which all come back normal—no clotting disorders.

On April 7, 2011, I undergo my cerebral angiogram. I feel confident in my doctor (especially since I researched his extensive and amazing credentials.) The angiogram goes well. I spend about 6 hours in the hospital in post-op and am sent home to recover. Other than my groin being sore from the catheter insertion, I am okay. I am on restricted activity for a week, with complete normal activity to resume at 2 weeks.

I meet with the NIR for a follow-up about a week after the procedure. All looks good. He informs me that my fistula is indeed low-grade. He tells me he’s about 80%-90% sure that he can cure my PT. He is less certain about the dizziness (as is the ENT) but feels that they are somehow related. He tells me the surgery I would undergo is an endovascular embolization of the DAVF. He would perform the procedure the same manner in which the cerebral angiogram is done—go in through the groin with a microcatheter and then inject the fistula with a substance called ONYX—essentially superglue for the head. He tells me that it is not absolutely medically necessary for me to have the procedure. I can choose to monitor the fistula with regular testing. He tells me that the procedure is not without risks (stroke, paralysis of the left facial nerves if too much ONYX is injected.) He leaves the decision to me.

On May 5th, 2011, I undergo neurointerventional surgery. The doctor inserts a catheter up through the artery in my groin, all the way through my body, and up to the area of the fistula. He then injects the embolizing agent ONYX. He injects a microgram at a time until he can see on the imaging that the fistula is closed off. (He is simultaneously doing mini cerebral angiograms and injecting dye to see the progress of the ONYX.) The surgery takes approximately 3 hours. He removes the catheter and plugs the insertion site w/ an angioseal. I spend the next 36 hours in the neurointensive care unit, where they give me steroids to control swelling in the brain. It’s way too noisy in the ICU to be able to tell if the PT is gone. It’s also difficult to tell if I am still dizzy because it’s hard to sleep, and I’m receiving a lot of medication. I am then sent home to rest and take it easy. I am given more steroids for 6 days (those are AWFUL.)

Once I am home, I immediately hobble to the master bedroom closet and close the door. I don’t hear anything. I concentrate. Still nothing. It is quiet in my head for the first time in months. I hobble to the closet several times a day for the next several days—anxious, afraid that I might hear something. And yet I don’t.

It is quiet.

On May 17, 2011, I have my follow-up with the NIR. I am able to see the actual procedure step-by-step via the images on his computer. The images show the microcatheter feeding through my artery up to the fistula in the sigmoid sinus near the dura mater of my brain, and then I see image by image as the embolizing agent was deposited and slowly closed off the fistula. Pretty amazing—I know I am sitting in a room with one of the smartest and most talented people I have ever met. My whoosh is gone, and my dizziness is gone. The doctor calls me cured. I will need to have a follow-up cerebral angiogram in November 2011. If all still looks good, I will have an MRA 6 months after that, and another MRA a year later.

I am so very thankful to have found 2 very special docs—the ENT that was educated enough to use a stethoscope to hear the bruit (the sound of turbulent blood flow) of the DAVF and the neurointerventional radiologist that he referred me to that performed one very delicate, advanced procedure. Yep, definitely thankful. And lucky.

A few months ago, we highlighted a case report about a pulsatile tinnitus patient with unilateral (one-sided) pulsatile tinnitus who was cured after a procedure called a carotid endarterectomy (CEA).  Only the abstract (summary) is free and available online, so we don't know too many details, except that the underlying cause was determined to be "internal carotid artery stenosis" and the patient's pulsatile tinnitus went away after the procedure.  Hey, that's good enough for me!

But then I found this study of 14 patients with pulsatile tinnitus who underwent CEA; the report is available online in its entirety.  It includes extensive demographic information, including ages and sex of the patients studied.  At first glance it may seem like standard information but I thought parts were intriguing. 

For example, the report outlines that most patients were male, not female.  

On Whooshers.com, one of our very first poll questions was "Are you a male or female whoosher?"  The results for that poll were about 80% female, 20% male.  Recently, and for the first time, I decided to post the same question again, since we have so many more visitors to the site from all over the world than when the poll question was originally posted.  Nevertheless, at the time this post is published -with about 50 whooshers polled so far- the results remain remarkably similar to the first set of results: an 80/20 ratio. (To vote in the poll, please see the poll box on the right hand side of the page!)

So, that this particular cause has a higher number of male sufferers is, to me, an interesting observation.

Another interesting observation?  The median age of the pulsatile tinnitus patients with "ipsilateral carotid stenosis" is 68.8.  The youngest patient in the study was 53 years old.  The writers point out:

"Other authors have reported that pulsatile tinnitus predominantly affects the 20–40 years age group and is rare in those over 65 years old. However, their samples included aetiologies other than carotid atheromatous disease, such as A-V malformations, which occur in younger patients."

What do I understand from this? That age and sex may play a role in identifying the underlying cause of pulsatile tinnitus.

But of course, the best part is the report's conclusion:

This is the largest series to look at the effect of CEA on pulsatile tinnitus. CEA improved pulsatile tinnitus in 10 of the 14 cases (70%). This proportion was increased to 90% in patients with unilateral symptoms and ipsilateral disease with ipsilateral CEA. Patients with pulsatile tinnitus should be properly assessed to look for causes other than carotid atheroma before advising on prognosis or considering any possible treatments. CEA is effective in improving pulsatile tinnitus in patients with severe carotid stenosis."

This report will be added to the Cured Whooshers page, where you can find the link to the other report referred to above, as well as many other links to case reports about possible and curable causes of pulsatile tinnitus.  

To see the report in its entirety and review with your doctors, click below:

Source: "Carotid Endarterectomy Relieves Pulsatile Tinnitus Associated with Severe Ipsilateral Carotid Stenosis," J Kirkby-Bott, H.H Gibbs, European Journal of Vascular & Endovascular Surgery, Volume 27, Issue 6, Pages 651-653, June 2004.

I received an email recently from a nice woman named Sue who told me she is a cured whoosher.  Boy, do I love getting emails like hers. 

The removal of a grommet -an ear tube- relieved her whooshing... the same whooshing that didn't start until after the grommet was surgically inserted into her eardrum to correct another problem (SIGH!).

The surgical insertion of a grommet, also called a Tympanostomy tube, is often a solution for children with persistent ear infections, but adults get grommets, too.  And of course, plenty of people have them and never experience complications.  It's even possible for a whoosher who has had a grommet inserted to have a completely fine experience with the grommet and a separate underlying cause of their pulsatile tinnitus.

Beyond the terrible and frustrating irony that a method to fix a problem (burst ear drums) led to another problem (pulsatile tinnitus), this story has a happy ending.  Sue's grommet was removed and she is whoosh-free!

Here is Sue's story:

"Both my eardrums burst a couple of years ago and the left one never did heal properly and caused me pain and popping constantly.  ENT consultant suggested a grommet and it worked perfectly, taking away all the symptoms.  But six months later, the whooshing suddenly began.  Day and night it plagued me.  I could not concentrate on anything, the simple pleasure of reading was beyond me.  Sleep was something other people did.  Utterly miserable, the ENT consultant was not particularly helpful.  She was quite content to tell me that she didn't know what the reason was and that I should basically just learn to live with it.  She actually suggested that I see a psychologist as she felt I needed some help with my mental health as I was reacting to the problem too severely!!  Needless to say, my acceptance of her views were nil!  She relented to a CT scan and an MRI scan, but nothing was found that seemed to be causing the whooshing.  She suggested that the grommet be removed but could not give a reason as to why it would be the grommet causing the whooshing.  Although I was wary about returning to pain and popping, I decided that they were easier to live with than the whooshing.  The worst scenario would of course be pain, popping AND whooshing!  But I decided to take that risk.

I woke up from the grommet removal operation and heard......nothing!  The whooshing was completely gone!  That's been two months now and it is still gone and the pain and popping is minimal.  I can only assume that the grommet had wiggled into some position and was acting like a megaphone in my ear."

Thanks to Sue for sharing her story.  If you have had grommets or tubes inserted, it's worth mentioning to your doctor, of course.  You never know.  And please share your story with us at whooshers@gmail.com and on our very lively and friendly Facebook group page!

Another pulsatile tinnitus patient is whoosh-free!  Hooray!  Check out the inspiring Cured Whooshers page for this story and many more.   

"Absence of evidence is not evidence of absence.” - Carl Sagan

How many times have you had diagnostic tests and hoped that the doctors "see something" on your films?  What if your doctors told you your pulsatile tinnitus was not caused by something they see, but rather, something that is MISSING from your anatomy?

That's what happened to the patient in this case report, one of the most interesting reports I've seen in a while.  It's a complex one to read, so be sure to review it (and the impressive photos!) with your doctors.  

While I consider any case for which the underlying pulsatile tinnitus cause is determined to be a success, this case report does not end with the words "the patient was cured," so it's not technically a "Cured Whoosher" story.  The good news is, however, that after the diagnosis, medication was prescribed and reported to have reduced the intensity of the patient's pulsatile tinnitus. 

A summary: the underlying cause of this patient's pulsatile tinnitus was determined via a MR-Angiography test (not an invasive test like the cerebral angiogram), after years of other test results that were determined to be "normal."  The culprit: a piece of anatomy MISSING, not a growth or stenosis or something else.  That's right, the absence of something was causing the whooshing.  

The patient is a 74-year old man who complained of pulsatile tinnitus for ten (10!) years. His pulsatile tinnitus was subjective, which means that doctors could not hear the whooshing (also called a bruit) with a stethoscope.

The authors of this medical study describe their findings as "an unexpected situation in clinical boundaries" because the patient had many tests that revealed nothing significant.  They say the purpose of the report "is the description [of] absence of the vertebral artery causing of pulsatile tinnitus, in order to offer useful data to anatomists, otorhinolaryngologist, radiologists, vascular, head and neck surgeons."

My interpretation: this is a rare underlying cause of pulsatile tinnitus that not many doctors have discovered, but these doctors did, and they would like to help others do the same.   

So, after our fellow whoosher had many tests that were returned "unremarkable," he had a test called an MR-Angiography.  It was upon review of that test when doctors noticed something was MISSING.  The patient was missing a vertebral artery.  After careful consideration, which is detailed in the report (along with a lesson on anatomy that I admit my eyes glossed over--this is complicated stuff!), the doctors concluded that this missing piece was the cause of the patient's pulsatile tinnitus.  Based on this determination, they prescribed some medication for the patient and waited to see what happened.

"We realized that inadequate vertebrobasilar circulation could cause pulsatile tinnitus. Therefore, the patient was discharged from the hospital after administration of betahistin di hydrochloride and trimetazidine for a long time. After one month, when we checked up on the patient again, we confirmed that pulsatile tinnitus had reduced the intensity. But, it had not disappeared entirely."

They stress that the MR-Angiography was THE test to determine this; no cerebral angiogram was necessary in this case.  So I suppose the doctors are also making the point that a cerebral angiogram is not always necessary to determine the underlying cause of pulsatile tinnitus. 

They conclude:

"To our knowledge, there has been no previous report of absence of VA causing of acute pulsatile tinnitus. In addition to the various arterial PT etiologies that were reported so far. Absence of VA which may cause pulsatile tinnitus should be taken into consideration."

Also, one tidbit that the piece suggests as an aside, which I hadn't heard or read before with such detail, is that if you press on the side of your neck where the whooshing is and the whooshing subsides, that's an indication that the cause is venous (having to do with the veins).  If pressing on the jugular does not change the whooshing, that's an indication that the cause is probably arterial (having to do with the arteries). It seems to me that this determination is a pretty simple one to make and might even be useful in diagnosis and treatment.  

All we and our doctors need to know from this case report is summed up in the very first line:

"Absence of the vertebral artery is rare, and incidentally encountered in radiological imaging technics." 

There are many possible underlying causes of pulsatile tinnitus.  Many are rare.  Most are difficult to spot.  Some of them can be "cured," and others like this one can be treated if not all together cured.  Read more about some of these causes and reports on the Cured Whooshers page and review them with your doctors. 

Source: "MR Angiography Imaging of Absence Vertebral Artery Causing of Pulsatile Tinnitus: A Case Report,"*Mehmet Cudi Tuncer; **Yekta Helbest Akgül & *Özlen Karabulut,* Department of Anatomy, Faculty of Dicle University, 21280, Diyarbak¹r, Turkey.** Department of Otorhinolaryngology, Özel Diyarbakr Hospital, 21100, Diyarbakr, Turkey, International Journal of Morphology, v.28 n.2 Temuco Jun. 2010.