Yet another Cured Whoosher story.  Pulsatile tinnitus is a real symptom.  This story, like so many others, follows a familiar theme: Uncertainty and Perseverance.  For this whoosher, who we'll call MCOC, the end of the story is silence! 

For more personal stories and links to medical reports - written by doctors, for doctors - see our Cured Whooshers page. 

This is not a short story.  No one who suffers from the life altering diagnosis of pulsatile tinnitus will tell you the short story, because there isn't one.

In November of 2011 I was diagnosed with breast cancer; a non-invasive, curable, surgery and radiation treatment-receptive cancer. I am very lucky and blessed to be clear... but that is not my "whooshing" story.

The sound of the pulsing in my right ear began about a month or so before I had my breast cancer diagnosis in November of 2011. I passed it off as a nuisance and just bulled my way through the cancer surgery and the holidays. It was a quiet New Years Eve recovering from surgery. January 7, 2012 is my marker date for the diagnosis of pulsatile tinnitus. I told my breast cancer surgeon in the follow up appointment that I was experiencing this ongoing pulsing of the sound of my heartbeat in my right ear.

This was the beginning of 24 months of hell on earth, but the funny thing is that the doctor was correct, that is exactly what it was. She called it on day one. She said, and I quote: "you have something called pulsatile tinnitus, oh, it's just a menopause symptom, so just put a fan by your bed."

To be perfectly honest I couldn't have been more insulted but what I didn't know is exactly how bad things were going to get and how long it was going to take to get to the resolution of this sound that was now much more than an annoyance.

By March, the 30 days of radiation were over and the pulsing sound, the "whooshing," was out of control. By now it was so rhythmic that I thought was going to go crazy. Like many of you I was able to stop the sound when I pushed on my jugular vein. I would prop myself up at the end of the day when I wanted to relax and shove a pillow under my neck to stop the sound and just relax. An almost impossible task since the noise would get to be the loudest and just begin to roar at the end of the day.

By now I had a conversation with my GP who wasn't at all sure what it was and suggested that I start with an ENT....sound familiar?  And of course the appointment took at least 6 weeks to get. I will tell you I got much more emphatic and forceful about appointments as time went on. The story is the same for most of you... the first ENT appointment resulted in CT Scans, hearing test, vocal strobe, and sinus exam and a carotid artery ultrasound. All of which came back completely normal, and yet the sound persisted.

I can not tell you how often I had to repeat and emphasize that "This is not a ringing in my ear, this is a pulsing! The sound of my heartbeat!" Ringing? I would have been happy just to have ringing, and that in itself is very debilitating, but this has now begun to interfere with my life and as all of these tests drove my deductible I was now saddled with the stress of the insurance claims and bills that started to pour in.

My ENT was at his wits end, had no idea what it was, moderately sure that I was fabricating the whole thing, desperately tried to hear the sound from the outside and threw his hands up and sent me to San Francisco to a Neurological ENT. And no surprise here, it took another 6 weeks to get the appointment, and the sound persisted.

I moved on to sleeping with an ear plug to muffle the sound, trying to sleep with earphones with the sounds of rain from my iPhone app, wearing an ear plug during the day to try to block out the sound so that I could work, but my anxiety and distraction from the sound had me in tears holding my head screaming, "I can't make it stop!!" My husband was desperate to help, but helpless.

The San Francisco appointment day arrived and I drove to the City, met with a new intern who took all the notes and then brought in the doctor who had heard of and believed that I had a case of pulsatile tinnitus. Praise God! Somebody believed me. And you guessed it, another round of x-rays, MRI's and tests, with and without contrast this time. More tests, more claims, more bills but seemingly no progress while the sound persisted.

Following up on the results I talked with the doctor's nurse who told me the scans came back with no abnormalities and that the doctor was unable to target any definite cause and to call him back if it got worse. Really? That is your solution? I pressed her to go back to the doctor saying that my level of insanity was raising daily and he needed to look again. A day later I am standing in Staples of all places, my phone rings and, seeing it's the doctor, I took the call. I found a chair in the back of the store and was told one more time that the doctor doesn't have anything new to add and to call back if it gets worse.

I collapsed in tears.

I went back to my GP in tears and in his desperation he referred me to the group neurologist. This doctor was so wonderful and compassionate, was very informative and kind and sent me for a brain CT scan.  Once again, no surprise here, nothing abnormal. At least I knew I had a clear brain scan, my Mom had had MS. In the follow up appointment to this I actually brought my husband, who up to this point knew I was capable of managing but he could tell I was starting to lose it. The doctor was so sorry that there was nothing he could do to help me because it was not in my brain. He was convinced it was a vascular issue, complimented me on my perseverance and asked me to please keep him in the loop. He did learn a few things though, he learned, to his surprise that the Internet had him listed as someone who could diagnose and cure. I collapsed in tears once again. I was not resigned to a life with this noise but I was so defeated, depressed and exhausted, and now in medical debt, I just took matters into my own hands.

I found a homeopathic doctor in Marin County who had no idea what the pulsing was but set about helping me to address all the stress issues that were starting to affect my overall health. I had cranial work, felt great but didn't make the pulsing go away, but we started to make progress because that doctor said he could feel the pulsing!!  I tried acupuncture, felt great but didn't make the pulsing go away just made my menopause and exhaustion issues subside. Chiropractic care helped my back but no cranial worked, it never would have.

And then I met Ernie, an electro-biologist who believed me, truly believed me. He gave me an MP3 player with a microphone on it that would fit into my ear. When the sound would start I was to announce which ear it was and put the mike in my ear for a short period and record it.

By now it was September and the change in the weather and the cooler weather was helping my attitude. I love fall. After Ernie dissected the MP3 he called me and we listened to it together. I burst into tears as I identified for him the sound and it was no longer a mystery. It was wonderful and terrifying to hear the sound out loud on the outside of my ear.

I went back to the ENT with the disc, advising him that the doctor from San Francisco had told me there was nothing he could do. Surprised at this he looked up the notes from the doctor in San Francisco and told me that that in fact was not even close to what I should have been told. A clear lack of communication from the nurse who talked to me who clearly was giving the wrong results to the wrong person. Just frightening on many levels. By this time in my life I was suffering greatly from depression and told the ENT that we needed to start over. I was either going to stick a pencil in my ear and make myself deaf, or I was pretty close to jumping off the bridge. I did not use the word suicide, but he did, when he said it I told him yes, it had crossed my mind. No surprise here, he panicked. He asked me a few questions and immediately emailed an emergency email from his cell phone to the doctor in San Francisco. As with Murphy's Law, the doctor was out of town for a week, so I called on the following Monday to make a new appointment.

Before the appointment he sent me for another set of high resolution MRI scans this time thinking he might just see something. Once again my husband joined me and this time I needed some muscle with me. Clearly this doctor, knowing I was on my second go-around, had done his homework and looked at my old scans. Yes, I said "old" scans, the ones from 6 months ago, not the new high resolution ones that I just paid for and endured. He identified what appeared to look like a half circle, or crescent shape to the sigmoid sinus bone that he called a little abnormal looking on the right side. Interesting to point out that the same shape was beginning to occur on the left side although not as pronounced, and he asked me if I heard sound on the left....I told him yes, occasionally.

After much discussion he indicated that because it is close to the temporal bone that if there was an opening here then I would clearly be able to hear the sound of the veins whooshing the blood through it and that would be the source of the sound. We now have a name for a diagnosis...SIGMOID SINUS DIVERTICULA.  I won't go into the detail of the discussion we had about the lack of communication from 6 months ago. With his eyes wide open he admitted what we really could have seen it in the first go around. I let it go, had to, it was the only way to move forward.

There is a doctor in Baltimore who, I'd learned, is famous for finding and fixing a sigmoid sinus diverticula, a Dr. Eisenman. I called his office set up a conversation and planned to go to Baltimore. I would have gone to China if I needed to. But, we agreed to see a Neurointerventionalradiologist (NIR) by the name of Dr. Halbach at UCSF. This man and his team saved my life. We met with Dr. Halbach, he was kind, compassionate, understood exactly why we were there and set about the task of explaining that it could be a Dural Fistula and yet could be the Sigmoid Sinus Diverticula. We all agreed that I would set up for a cerebral angiogram, at USCF on May 9, 2013. We signed all the papers asked all the questions and prepared for the 9th of May.

I was scared, in twilight sedation and watched as the big screens next to me showed veins and vessels in my skull. There was an army of doctors, students, anesthesiologists....a huge team, it's a teaching hospital. I felt safe. I held my breath when I was told to and they would shoot the dye in my skull. The biggest miracle of the whole process occurred when I felt a tap on my shoulder and I heard..."It's not a dural fistula. It's a sigmoid sinus diverticula and we are going to go in and fix it with a coil".... I nodded my head.

The next thing I knew it was 5:30 in the afternoon and I was waking up in recovery. My husband's loving eyes told me he knew the back story from the morning and that they fixed it. I was checked into the hospital for the night. I listened with great trepidation for the sound of whooshing in my right ear. I rolled from side to side and listened with anxiety and anticipation. The most beautiful sound was the sound of nothing! The silence was deafening!!!! I didn't believe it at first; I couldn't allow myself to believe that the sound was gone until the doctors, with all their students, made their rounds in the morning. The doctor and about 7 or 8 students circled the end of my bed. He explained why I was there and what they did.

As I watched these young people who were the ages of my kids (30's) I seized the teaching moment. As I explained that I had just experienced my first full night's sleep in 18 months, with no sound to wake me a half dozen times, I began to weep. I implored them to listen to their patients and understand that if patients come to them with a whooshing sound they must believe them, respect them and that time is of the essence when getting to the diagnosis and cure. They need to insist the insurance companies listen and approve the procedures so that there is no experimental attitude.

I had my new life now. I also knew that as the left side presented that I would know what is was and that is where we are today. Soon I will once again admit to UCSF for the cerebral angiogram for the left side. I will still be nervous but I know what to expect. They will look for a fistula and the sigmoid sinus diverticula and work to fix the one they find.

For me it appears that it is genetic, the thinning of the bone in this area could have been hastened by my age, 59. I do not have osteoporosis but I am at the bone thinning stage of my life. Do not give up the battle to find the source of your pulsatile tinnitus, even when you are exhausted, depressed, possibly considering suicide as an option for the end of the sound. You will feel like you are beating your head against the wall as you take ownership of this. People will chuckle when you tell them you found this web site called Whooshers.com . I always told people that "if it was funny, then it would be funny." But there is nothing humorous about the insanity that it can cause. I have since seized the process as a huge teaching moment, gone back to all the doctors whose paths I crossed and told them the end diagnosis and resulting procedure. They all already knew the story. Some asked me where the system was broken and how to fix, others just praised the diagnosis and the fix and all were very grateful that we had found the cure. My GP just responded with WOW because he couldn't remember how to spell Hallelujah!! They all know now what to do when a patient sitting in their office breaks down because the torture of the whooshing sound won't subside.

Maybe someday when enough doctors become aware and the insurance companies admit it is real, the sound and suffering will be diminished for those who have the diagnosis and the families and co-workers who have to endure the mental anguish of the ones they love.

My prayers go out to all who have endured this....frankly, I would rather give birth than go through this again. Be well.

MCOC

There are many, many possible underlying causes of pulsatile tinnitus. Intracranial hypertension is one of these causes. 

Over the years we've heard of more and more whooshers being diagnosed with IH, in part because of the increased awareness. You can read some of the personal stories and see links to medical reports on the Cured Whooshers page. 

The name for this condition has changed.  IH, once known as pseudotumor cerebri and benign intracranial hypertension and increased intracranial hypertension, has affected many patients of all ages and sizes for as long as anyone can remember, but much is still unknown about the condition.  Even the way IH has been diagnosed has gone through some shifts and changes as more patients are observed and treated. There are many support groups that provide help for patients and medical institutions around the world that study cases and report new findings.  

The Intracranial Hypertension Foundation has a helpful page about IH diagnosis that you can review and share with your doctors. 

Again, IH is just one possible cause of pulsatile tinnitus; there are many, many others.  But this month, take a few minutes to learn about this one and read some of the inspiring stories by patients who experience it.  All of us can learn about hope and endurance from each one. 

Here's to more answers and hope!