I am a recently cured Whoosher, and I would like to post my story so that it may help others. I found your site to be very helpful to me, and it is my hope that what the doctors found for me may give others some help as they seek the reason(s) behind the terrible noises in their head.
 
Here is my story:

My husband and I are in our late 50's, retired, and were touring Ireland, when on February 24th at 3am I experienced what I thought was the worst migraine of my life. The pain on the left side of my head was incredibly intense. Within hours I began to suffer from pulsatile tinnitus, and my left eye began to turn inwards, and I could only see double looking through both eyes.
 
The ophthalmologist diagnosed me with Sixth Nerve Palsy, and the neurologist and the first MRI of my head could find no reason behind the pulsatile tinnitus and the Sixth Nerve Palsy. Normally these happen to people with high blood pressure, diabetes or head trauma. I suffered from none of those. I was told that "hopefully" it will all right itself within a couple weeks or a couple months. My pulsatile tinnitus was also a bruit, so the doctors could hear it with a stethoscope.

My neurologist ordered another MRI two weeks later to be sure nothing was developing. Luckily, the person who read that MRI found a cavernous sinus arteriovenous fistula, and I was sent to a hospital in Milwaukee which is the only place near us that would be able to help me. Fortunately, we have such a facility close to my home. I was sent to a doctor at Froedtert Hospital and The Medical College of Wisconsin by the name of Dr. Osama Zaidat.
 
When I took the MRI films to Dr. Zaidat, I learned that it was very unusual to find a cavernous sinus arteriovenus fistula on an MRI, especially since mine was not presenting in the usual manner, which is that the leaking blood affects the eye on that side, and the eye often bulges and becomes very red. The blood leaking from the fistula in my case was going down the back and not to the front behind my eye, making this diagnosis more difficult. This was just another one of the fortunate aspects of my case, that the MRI technician found the fistula on the MRI.

In addition, the doctors have diagnosed me with Fibromusuclar Dysplasia (FMD), a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. As a result, areas of narrowing (called stenosis), aneurysms, or tears (called dissections) may occur.  If narrowing or a tear causes a decrease in blood flow through the artery, symptoms may result. 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. (Thus, it was a brain aneurysm that caused the fistula and all the maddening, non-stop noises on the left side of my head.)

Knowing this, my doctors are ordering angiograms to look at the right side of my head to see if there are arteries that may have a problem there as well. I am still suffering from the Sixth Nerve Palsy; however, my eye does seem to be getting better, and I am hoping that it will soon track the same as the right eye, and my double vision will be cured as well.

Dr Zaidat and his team then did a brain embolization on me on April 4th. They tried a new technique using flexible metal stents that telescope into the artery. Unfortunately, that only stopped the fistula flow by about 20%, and I awoke with no change in the pusatile tinnitus. Just this past week, on May 2nd, I went into surgery again. This time they attempted to go through the groin again up the venous side, but they ran into problems (I assume because of the FMD) and wound up going from the right side of my brain to the left to the place of the aneurysm. I was in surgery for about five hours. There they placed two coils and surgical glue which stopped the leak and the fistula. The procedure was 100% successful, and I awoke with no pulsatile tinnitus! It was wonderful!
 
You asked how I am feeling. The short answer is fabulous. I have no pain and no whooshing and I have every hope that the Sixth Nerve Palsy will correct itself soon as there has been improvement since Feb 24th. I "only" suffered from the pulsatile tinnitus for about nine weeks before they were able to cure me.
 
I have been very, very fortunate. Although I am still dealing with the Sixth Nerve Palsy, I am so grateful for the care I received by such a great medical team.  I have stopped and thought very, very often during these past four days that there is amazingly no noise in my left ear to contend with anymore, and I am so grateful for that. I am especially grateful at night as that was the worst time when all is quiet and the noises seemed to increase in volume and variety!
 
While all of this is pretty scary for a person who considers herself in excellent health, there is a bit of comfort in the doctors finding out what was wrong with me, being able to fix it for me, and having a name for it.  Again, it is my hope that other people will benefit from my experience in that if their symptoms mirror mine, they may have suggestions for their doctors for their condition and of course, for ultimately ridding them of their pulsatile tinnitus!
 
Sincerely,

Kathleen

Read this and other cases of cured whooshers on the ever-growing and always inspiring Cured Whooshers page.  

In the last year or two, with the help of iPhones and similar devices with recording functions, many whooshers have recorded their whooshes and sent them in to me.  How neat!  We already have a page with sounds similar to whooshing sounds that I encourage everyone to explore, but I'm going to be posting more of these sound files as they come in. 

I've added the REAL whooshing sound files to the Pulsatile Tinnitus Sounds page, along with brief stories the whooshers sent with them.  

As a reminder, pulsatile tinnitus can be objective (others can hear it) or subjective (only the patient can hear it).  Obviously, these files are recorded by folks with objective pulsatile tinnitus.  But, I wonder, of those people diagnosed with subjective pulsatile tinnitus, how many actually have objective pulsatile tinnitus?  Sometimes the sound can be difficult to listen to, even with a stethoscope.  Mine is objective and can be heard by others without a stethoscope, however some doctors have had difficulty hearing it with a stethoscope.  Interestingly, I haven't been able to record mine - yet.  Still trying!

Some time ago, we explored an iPhone app that might assist in recording the heartbeat sound.  There are many other applications that Whooshers have used to successfully record their whooshes; some of them are described under the REAL whooshers' audio files. 

I'm compiling more, so if you are able to record your whoosh and/or are willing to share the audio file with Whooshers.com and let me know the program you used to record it, please email me at whooshers@gmail.com.  If you're a whoosher, you may like to play these files for your family, friends and doctors, so they can hear a hint of what whooshing sounds like!  More than simply entertaining, these audio files may include clues for our doctors as to the source of the pulsatile tinnitus.  Doctors, have a listen!

CLICK HERE TO HEAR REAL WHOOSHING SOUNDS!

-WhooshEr

Suicide is something no one wants to talk about - or think about - but the reality is that in the few years this site has been up and running, I've heard from more than a handful of people whose pulsatile tinnitus is so debilitating, so disturbing, that previously unthinkable thoughts surface. 

So I'm going to talk about it.

Sometimes it's the actual sound that is debilitating; other times it's the lack of seriousness and consideration our symptom receives in some doctors' offices or just the sheer stress accompanying it all.  The thought can last a few moments or be profoundly overwhelming.  Sometimes, sadly, it takes over.  These poll results prove that these thoughts are not all together uncommon. 

The majority of those Whooshers who participated in the poll answered "No," but even if only a single person had answered "Yes," I would still stress this: You're not alone. One quarter of Whooshers who participated in the poll have had suicidal thoughts.  That is a terribly large percentage. 

If you or someone you know is experiencing difficulty, there is help.  You can join our vibrant Facebook group page for support (posts are private and accessible only to group members).  There are many resources, too, at the International Association for Suicide Prevention (IASP).

Or you can write to me at whooshers@gmail.com.

If you're a doctor, friend or family member of a Whoosher, please consider these results.  And stay close.  Pulsatile tinnitus is a symptom that not too many know about before they begin experiencing it, and dealing with it can be a very, very isolating experience.  

-WhooshEr 

A couple of days ago I received an email from a whoosher who first contacted me a few months ago.  Like many of us, she was almost at her wits end searching for a proper diagnosis, and treatment seemed like an unattainable goal. But she and her doctor achieved it, and just a day after her surgery she wrote this:

Every time I lean forward, sit down, stand up, swallow I expect a loud whoosh….and nothing! My surgery was yesterday. I do have some pain in my right ear, but it's a small price to pay for peace and quiet after two solid years of whooshing that progressively got worse.

As everyone has told me, Dr. Eisenman from the University of Maryland is AMAZING! Thanks to the Whooshers.com site I found [the abstract for] his research study from digging around on the site and realized that this doctor was located a little over an hour drive away. On gut instinct, I thought this would be a good bet, since even if I didn't have the same condition that he researched, perhaps he would look until he found what was wrong. Fortunately the diagnosis Dr. Eisenman found (on a CT scan of the temporal bones) was the same as in his study abstract I found on the Whooshers.com site.

Sigmoid sinus diverticulum (for dummies version)

Sigmoid sinus = S-shaped vein that is connected to jugular vein and transverse sinus that all work together to run blood back and forth to brain. The sigmoid sinus (vein) sits right in the ear bones AKA the temporal bones.

Diverticulum = bulge in vein caused by blood flow going through a weak area of the vein (kind of like a weak spot in a water balloon)

The bone area next to the vein wears away over time as well.

The CT scan of the temporal bones and a trained eye revealed the bulging vein near the ear and some missing bone in the same area. The surgery involved shrinking down the bulging vein and using bone grafts and synthetic materials to rebuild the worn-down bone.

Cause of the condition (sigmoid sinus diverticulum) is generally unknown, but it is seen in patients with similar demographics that lead to benign intracranial hypertension, but no direct causation has been found that increased spinal fluid causes the sigmoid sinus diverticulum. There are other possible individual factors. For me one of which is extra small veins on the left side of brain that caused extra blood flow in right side, which could have led to the bulge on the right side. Also, a really bad ear infection with prolonged fluid buildup preceded the onset of the pulsatile tinnitus symptoms, which may have exacerbated an already developing bulge. Another couple of factors, which the doctor doesn't think are related, but I'll toss in there are that I had spinal meningitis as a baby and I have high blood pressure, which started when I was an otherwise healthy teenager.

The two-year diagnostic process leading up to the definitive diagnosis was frustrating and stressful. The sounds started after a really bad ear infection in April 2010. After three rounds of antibiotics, fluid remained in my ears for about a month during the time I flew on an airplane. I never had ear infections as a child, so I didn't even realize I had one until it was really bad. Musinex was prescribed for the fluid and eventually it went away. But that's when the whoosh whoosh whoosh started, so I went back to the doctor and was prescribed ear drops with steroids. Still, no improvement in the sound and the doctor said she could not see fluid.

I ended up moving to a new state and I went to a new doctor with reports of the whooshing. When he pressed on the carotid artery and I reported the sound stopped, he said, "Well this could be an aneurism." He ordered an MRA (angiogram with dye) to rule out aneurism, vascular malformation and tumors. Needless to say, upon hearing the word "aneurism," I was in tears and thinking something really bad could happen to me. When the test came back "normal" I was relieved I had nothing life threatening, but still very much disappointed that no cause was found.

The next step was an Ear Nose and Throat doctor, who really tried to figure it out. He ordered an MRI of head and neck and did note that my left brain vein was smaller than the right and that could have something to do with it, but still no definitive diagnosis. He also placed a drainage tube in the ear drum in case there was a eustachian tube drainage problem- it wasn't his first suspicion but given the low risks of tube placement, it was worth a try. It didn't improve a thing and he removed it after a couple weeks. He said I needed to see a sub-specialist of a sub-specialty. He offered up a couple names of doctors in town, but I was so discouraged and frustrated at the time, I let it go for a while.

About six months later I broke down in tears because I couldn't hear the TV over my whooshing sounds. This was late at night, so I went to the Internet and found Whooshers.com. I spent several hours on the site reading causes of pulsatile tinnitus and felt like I was not alone in the world of whooshing. I also read several of the study abstracts and that's where I found Dr. Eisenman's name, and realized he was close enough driving distance I could see him. When I contacted him through email I got a personal response. Within a week I was able to get all the tests done and receive a diagnosis! I was so relieved!

The surgery seemed really scary to me at first since it's so close to the brain and would be done on a vein that sends blood to the brain. And technically the surgery is "elective" since the condition isn't life threatening, but my quality of life was starting to become low due to the constant whooshing sounds. As a musician it impacted my singing voice and made it hard for me to hear, in spite of having better than perfect hearing test results. Also the sound had gotten worse and louder over time where I could even hear it in more noisy environments. It was hard to concentrate on my work and sometimes hard to sleep at night. So I decided the risks were worth it, and with Dr. Eisenman's success stories, experience and research I felt I was in good hands and just went on faith.

As I'm writing this story, it's been about 24 hours since I left the outpatient surgery center, and my pain is manageable with prescription pain meds and the whooshing sounds are completely gone. I've had a hard time sleeping due to weird dreams about my ear bursting open and the sounds returning. Sometimes I wake up because of pain and other times I wake up because the silence is just so unfamiliar. I had gotten so used to every move making an exaggerated whooshing sound. It's something I'm very happy to adjust to, but after two years of constantly hearing and noticing the whooshing sounds, it is very strange not hearing it anymore.

I've had just one day of silence so far and I sincerely hope the cure is long-lasting! It was worth the effort of researching online and the pain of surgery. I encourage all whooshers to search for their cause and cure. Even if a cure isn't feasible, keep researching ways to manage it and searching for new medical studies. You never know… some new research might be right around the corner and a doctor might be right down the road. Or there could be a strategy that makes it a bit easier to live with.

Thank you to the founder of Whooshers.com for your dedication to helping us find peace and quiet while offering support to us and education to the medical community.

-Abigail T.

Abigail, thank you for sharing your story and especially for your kind words!  I've heard from a bunch of patients with SSD who were recently diagnosed and successfully treated.  It's encouraging and an inspiration for all Whooshers! 

I've added this story to the Cured Whooshers page where links to medical reports and personal stories about many underlying causes of pulsatile tinnitus are detailed.

There is much more information on sigmoid sinus diverticulum and dehiscence, including links to summaries of recent medical reports, lists of symptoms provided by medical institutions and more, within previous Whooshers.com posts, here and here.   

This poem was written by one of our Facebook group members, and she gave me permission to repost it here.  She said it was written straight from the heart during a sleepless night of PT.  There are some "bad" words, but let's be honest.  We've all been there.  

It's time for bed ~ but the swoosh is in my head.
With every beat my heart does take ~ a swooshing noise my ear does make.
I toss and turn and try to sleep ~ but in my head the thoughts do creep.
Is this real, this pain I feel? Just wtf is the deal?
Test after test, I try my best, but doctors I sure do detest.
They guess and guess and get nuthin but a hot mess.
They scan for this and scan for that, marking all the scans as stat.
How did I get here? Stuck in this hell?
Great mental stability was never my best ability ~ but sweet jesus what will it take? How many more appts will I make?
I'll never forget the day it started ~ the day my old life departed.
It's so sad looking back ~ this shit I feel is so wack :(
I miss playing cards with my friends ~ heckling was one of the hottest trends.
We would smoke, and we would laugh, good times we Always did have ;)
But those times have gone away since the swoosh is here to stay.
I wonder how I can go on, doing what needs to be done and never having any fun.
I miss those days and my crazy ass ways!
The swoosh is so hard to explain, it doesn't cause me physical pain.
It sucks the life away from you and there's nothing you can do.
Nothing is quite the same cuz now my life has become so fucking lame.
I can't sleep ~ I let the thoughts creep in too deep ;(
The thoughts and the swoosh, make it so hard to turn off my mind and leave this bs behind ~ now it's almost one and this poem is done ~ goodnight :)

 -Dorine Pidrak Steele