People write to me at whooshers@gmail.com at many different pulsatile tinnitus stages... the first morning they hear it... months later... years later... decades later.  Some have good news about a doctor they found who is investigating their case with great care.  Some write to tell me the underlying cause has been identified and cured and that they want to share their story on this site.  Others write to see if I know any doctors in their area. And others just write to say hello. 

Now that this site has been up for several years, our community has grown - in many ways we have grown together.  Sometimes I get an update email in my in-box from someone who first wrote to me years ago.  Updates are great, even when they're difficult to read.  Our experiences with this strange symptom often bring up a lot of difficult emotions - anxiety, pain, frustration.  But what I like is the feeling of companionship - friendship - especially when it replaces isolation.  That was the basis for which this site was created.

So I was happy to hear from "Lisa" recently, a whoosher who initially wrote me a while back.  When she first wrote, she'd already been through the ringer that so many of us have been through, of seeing doctors who did not acknowledge her symptoms properly or adequately, and trying to cope.  But this email had a hint of progress in the subject line: "Pulsatile tinnitus may be related to vascular malformation in the liver." 

Before I even opened the email I thought, hey, I recognize that name and I felt relief for her, for us and for all the whooshers out there who have yet to find answers. 

Hope is out there. Hang onto it. 

Lisa hasn't been "cured" yet, but she wanted to share her experience to show that hope is not just in the cure, it can be -and often is- in the path toward a cure, a path that is no doubt a twisty and windy one.  The underlying cause of her pulsatile tinnitus may very well have to do with her liver, not her ear apparatus, head or other part of the body normally associated with our cases.  Lisa's diagnosis was incidental, and her story is a reminder of our bodies' complexities. Her diagnosis is a new beginning but the path sure looks a little more clear.  Lisa, thanks again for writing back and for agreeing to share your experience here.  Below is Lisa's story:

I had previously shared my story of pulsatile tinnitus, which began in 2009.  Eventually, after seeing GP, neurologist and ENT, and after MRI and MRA scan of the brain, with no luck in finding an answer, I determined that I would have to live with it, and that it was somehow related to sinus'/allergies, as I noticed the sound was more obvious during certain seasons.
 
I just had an incidental finding on an MRI which determined that I have a vascular malformation in the liver.  It is very rare condition, and we were not looking for that according to any of my symptoms.  My liver blood-work is normal.  My GP ordered this abdominal MRI because of weight loss and some abdominal pain.
 
However, this vascular malformation can cause portal venous hypertension, and turbulent blood flow because of shunting in the liver, thereby putting extra pressure on the veins and arteries, and put an extra burden on the heart.

This condition puts one at high risk for stroke, and heart failure.
 
I have to have more tests to measure the portal venous hypertension, but thought I would bring this up in case it could benefit someone else that is looking for answers.
 
I was so focused on the problem being in my brain (such as aneurysm), carotid arteries, a malfunctioning of my heart, sinus congestion, low iron/anemia, and it never would have occurred to me that a malformation in my liver could possibly result in the pulsatile sounds I'm hearing, but the vascular malformation in the liver can cause increased cardiac output/abnormal blood flow patterns due to the shunting, and this puts pressure on the veins and arteries that can affect all systems.

I had been told, "Just live with it."  One of my doctors rolled his eyes, and when his receptionist asked what "Pulsatile tinnitus" was he said, "she hears sounds in her head," and laughed a little!
 
I kind of attributed it to a seasonal event.  It came on in summer 2009, with a congested feeling in my head.  My thinking was that I suddenly had allergies.  I also thought it might be Benign Intracranial Hypertension (BIH), but I didn't have headaches or high blood pressure [symptoms often -but not always- associated with BIH] at that time.  I thought maybe it was stress-related.
 
I had an episode of Central Serous Retinopathy in 2010, during which this pulsing in the eye returned.  It is very subtle... things in my line of vision ever so slightly shift with the pulse.  It happens when I exert (forgive for saying this) any pressure, even to urinate!  
 
The weird thing is that I don't always have pulsatile tinnitus.  Mostly, it is in my right side.  it is typically when I lay on my right side that I hear it, and at night, when it is quiet.
 
I used to be terrified of it, truly.  I thought I had an aneurysm, that I was going to have a stroke, that I was going to die.  I told myself it is just congestion, somehow my hearing is amplified because of it... so I'd feel less frightened.  It is going on three years now, and I try to ignore it by shifting to my back or left.
 
I did see a vascular doctor once, and a doppler was done.  It showed more torsion on my right side.  He didn't mention a bruit; he said everything was "normal."  He was very dismissive of me.  The ENT I saw said that it was probably a venous hum because I can turn my head to the right and hear it, and when my head turns left or I'm straight-forward, I can not hear it.  He said it is a blood flow disturbance.
 
But, with the added symptom of eye-pulsing, I thought I needed to investigate more.  

My diagnosis is an important finding because a person could develop aneurysm there, bleed into the liver, or if it is a "high flow" malformation, (more serious than "low flow" malformation) it can cause heart failure.  This problem also puts one at much higher risk of stroke and heart attack.
 
I have to have an evaluation of what type of vascular malformation I have, and if treatment is required.  The options, to my understanding so far, are embolism to block blood-flow through the affected arteries (they are tangled in a similar way to AV malformation in the brain), lobectomy (removing part of the lobe of the liver which is affected), and if symptomatic and not responding to treatment of a high flow malformation, liver transplant.  If a person is asymptomatic, a wait and watch approach can be taken, that is just monitoring the malformation for growth.
 
Oftentimes these vascular malformations are congenital and people live with them all of their lives and never even know they have them, much in the same way as never being aware of an aneurysm.  If you have one that doesn't rupture, you may never know you have it unless it becomes an incidental finding on a scan for some other problem.
 
To rule this condition out, an ultrasound of the liver is needed, or if one is having an MRI of the brain to rule out brain aneurysm as a cause of pulsatile tinnitus, for example, the patient could request an abdominal study at the same time to rule out an aortic aneurysm or vascular malformation in the liver.  [Talk to your doctors about diagnositc tests and conditions to rule out] This malformation is considered very rare, so I wouldn't want to alarm and scare people, as it is highly unusual, but, it is valuable information in any case.
 
I posted not so long ago, when I believed that my pulsatile tinnitus was due to sinus congestion.  I still go through periods of not hearing it at all.  When I feel stressed, though, it gets very loud, so I know it has something to do with blood pressure in my case. (Mine is normal, unless I feel afraid or under stress)
 
I will let you know what the outcome is, in the hope that it may help another person, even if it is just one person.  I do hope no one finds themselves in this position, but if so, it could possibly even save a life.

This Cured Whoosher story was featured on CNN.com!  On the front page!  Great coverage of one possible underlying cause: Superior Canal Dehiscence Syndrome (SCDS), a cause we have covered extensively on Whooshers.com.

But wait.  CNN did a great job describing and covering the symptom, however the writers did not call it by its name:

PULSATILE TINNITUS

WORDS MATTER!  They matter because search queries for "pulsatile tinnitus" won't result in stories like this, unless the term is included.  They matter because unless the term is included in medical reports, doctors searching for them won't find them.  They matter because the medical community must recognize that tinnitus and pulsatile tinnitus are distinguishable symptoms.  They matter because patients are dismissed each and every day with a symptom that could be the sole symptom of a dangerous or life-threatening condition that warrants attention.  

Dear CNN:

Pulsatile tinnitus - sometimes called pulse-synchronous tinnitus - is a real symptom, affecting real people.  Pulsatile tinnitus has a real name.  We're petitioning for a diagnosis code so it may be more recognized by the medical community.

Please update your story to indicate that the patient was suffering from pulsatile tinnitus. 

Signed,

Thousands of Whooshers around the world who have visted this site, all in search of answers and support.  

Imagine.  If we had a diagnosis code and more appreciation and recognition of our symptom in stories like this, patients like Mr. Pavao may get answers sooner rather than later. THAT would be a relief. And it could save lives.

Congrats to Mr. Pavao, for sharing his story and for being his best advocate.  To his family and friends for supporting him when others around him dismissed his symptom. And to his doctors for believing in their patient and in their ability to help him. 

Tonight, whooshes around the world are masked with the sound of applause!

Enjoy the silence!

Source: "Finally, quiet for man who could hear workings of his own body," CNN.com, September 19, 2012.

See this and other Cured Whoosher stories on the Cured Whooshers page.  

Recently, I heard from another cured whoosher!  I'll call her Jane.  Jane's cause, vertebral artery dissection (VAD) with fusiform aneurysm, was identified via a non-invasive CTA, with contrast.  It's important to note that Jane's doctors first ordered a CT without contrast, but the findings were "unremarkable."  Her case is a good example of the complexities often present in our cases, because dissection like hers is not always present with fusiform aneurysm and vice versa.  And the symptoms of each are not always present either. Obviously, the pathology and approach in each case is different, and when possibilities like this arise - especially since they are treatable! - we need our doctors to investigate them. 

Doctors say vertebral artery dissection (VAD) is distinguishable from carotid artery dissection, which we've covered quite a bit on this site and for which there are many Cured Whooshers stories. There's still a lot that needs to be learned from cases of VAD, but according to many medical reports, improvements in the imaging available has helped more people get diagnosed quickly and accurately.  Since VAD is a possible cause of stroke, it falls within the more urgent causes and reasons why our symptom requires proper attention.  

Even moreso when there may be even more going on... in this case, the dissection was accompanied by fusiform aneurysm.

Medical reports suggest that fusiform aneurysms are rare but that more have been diagnosed in recent years, adding to the suspicion that, like many other causes of pulsatile tinnitus, the condition (and our symptom) may not so much be rare but instead rarely diagnosed. And doctors seem to be onto this. There are many medical reports about relationships and correlations between these factors, what were once considered separate causes/factors, and radioloigic images of them for doctors to consider. 

Luckily, this Whoosher's doctor recognized the significance of her pulsatile tinnitus and other symptoms and ordered diagnostic tests, so her cause was identified and treated fairly quickly. Jane, thank you so much for sharing your story.  It has been added to our Cured Whooshers page.  Enjoy the silence!!

I was diagnosed with a right vertebral artery dissection (VAD) with a fusiform aneurysm in December of 2011. I was pretty fortunate to get a quick diagnosis for my pulsatile tinnitus (which sounded like the squeak of a dog toy) due to a CTA with contrast ordered by an astute Ear, Nose and Throat specialist. I had already been to three different general practitioners due to a persistent migraine, but once the "squeaking" started in my right ear I decided I might have an ear infection. The doctor thought it was not an infection but artery-related so he ordered the test that discovered why. But what to do about it? I was told that it would take six months for the VAD to heal and that the squeaking might go away on its own.

My headaches got better and I slowly regained some of the energy I had lost but after seven months I still had the squeaking. I was feeling anxious and depressed about having to live with a loud, irritating noise constantly in the background. It was worse when I was under stress or concentrating hard. It got worse with exercise, so I ended up watching tv and reading in order to get the rest I needed for it to quiet down. So I went to a different doctor and he recommended an angiogram to make sure that my artery was healing and that the squeak wasn't caused by something else.

The angiogram confirmed the squeak was a flap of torn skin inside my artery and that the artery wasn't healing. Normally a stent would be placed to reinforce the artery but since the artery was ballooned and wider than 5 mm, I had to travel to a VAD specialist. The doctor there could put in a stent for aneurysms wider than 5 mm.

I ended up getting four stents along a curvy artery. And the squeaking is gone! It has only been five days but I'm confident that it is taken care of for good.  The procedure was done by angiogram. The doctor said that I could have been awake but I chose for them to put me out. He said it would be easier to keep still that way. I am really glad that I was asleep since I ended up having a bad nose bleed because of the heparin when they put in my breathing tube. I guess it was pretty bloody but it wasn't a big deal. I think it would have freaked me out a little if I had been awake. As it was, they cleaned me up pretty good except for my hair was caked with blood because of the nose bleed and also because they put pins in my head to keep it still when they were placing the stent. I threw up a bunch of blood that went down my throat into my stomach and had blood in my urine the first day (they put in a catheter-another reason I was glad I was knocked out). Since I was in ICU, which rooms don't have a shower, until I was released I couldn't wash the blood out of my hair until I got back to our hotel room. That really wasn't a big deal compared to dealing with the squeaking on a daily basis. I would do it again in an instant!
 
I was nervous before [the procedure], but mostly because I was worried they wouldn't end up doing anything. It was really not a big deal since everything went well. The doctor was confident in his ability and didn't make it seem like a big deal so once I met with him I was at ease.

Now, after the procedure, I am feeling pretty good.  I had the surgery on a Tuesday and went back to work the following Monday. My head doesn't hurt any more than it did before the surgery. I would say less, actually, because I don't have to take ibuprofen daily anymore. I was really surprised I didn't have to take anything stronger right after surgery. My head will hopefully "clear up" after awhile. My memory isn't as good as it used to be before the VAD. I don't know if I'll get that back or not.