A while back I heard from a woman who I will call "Vickie."  Vickie wrote to let me know she had just had surgery to address the underlying cause of her whoosh: Carotid-Cavernous Sinus Fistula (CCF).  Another Cured Whoosher!

There are a lot of medical report abstracts online about this cause; it is one of the more serious ones.  The UPMC Department of Neurological Surgery describes the condition and treatment options quite nicely on their web site. 

There were a few things that struck me about Vickie's story.  First of all, she detailed to me (and agreed to share with you) her medical history.  It's complicated.  Just a few months prior to her pulsatile tinnitus diagnosis, Vickie was diagnosed with a brain tumor.  Her whooshing began just one week *after* surgery for the brain tumor. Can you imagine? 

The second thing that struck me was that the specialist who recognized her pulsatile tinnitus (aka "whooshing") as a serious and distinct symptom was a neuro-ophthalmologist.  She had been having trouble with her eyes when she experienced the brain tumor, and she connected with a neuro-ophthalmologist.  So, when the whooshing started and she didn't know where to turn, she confided in him a second time, with the new symptom, and even though she wasn't feeling any issues with her eyes, it turned out he had a hunch what to do. That led her on the path to a proper diagnosis. 

To me, Vickie's story is the epitome of endurance.  To be diagnosed with a brain tumor, undergo surgery and start whooshing so soon in the recovery phase -and then- to be diagnosed with a second serious major health issue and have to address that? Well I'm exhausted just typing this.  I can't imagine what it must have been like.  But it proves the human ability to cope and endure and just keep moving forward.  That is hope.  

We patients are often confused about which specialists to turn to.  I've heard from a growing number of cured whooshers and I'm still convinced there isn't a go-to specialty.  Vickie went back to a doctor she trusted and who listened to her, rather than stay content with another who did not give her symptom the proper attention. And she found answers that way.  Bravo!

Vickie, I hope now, after the second major medical trauma in such a short period of time, you are able to relax and enjoy the silence and good health. Thank you so much for sharing your story.  

In September 2011 my doctor advised me to go to the emergency room to have a CT scan. My symptoms were a headache with incredible pressure pushing down into my left eye and double vision. I have had migraines all my life and I knew this was different. The doctor in the emergency room told me I had a migraine. I told him it was not a migraine and that my doctor wanted me to have a CT scan.

Hours later the emergency room doctor told me I had a brain tumor. I had to stay in the hospital to have an MRI which confirmed my condition. The double vision was not addressed at this time. I saw a neurosurgeon the next morning who was rather flippant. I did not choose him to do my surgery. I went for consultations with two other neurosurgeons at well known hospitals. My husband would only settle for a good neurosurgeon. We chose the third neurosurgeon who said the double vision was a separate issue. He advised me to see a neuro-ophthalmologist. I booked my surgery for the craniotomy to remove the brain tumor which took place in October 2011.

In the meantime I found a good neuro-ophthalmologist. He told me I had a 4th nerve palsy in my left eye which usually repairs itself within four months. I had a lot of faith in this doctor. There was no damage to my optic nerve which was good news. I still had double vision. This was managed by putting prisms inside my prescription sunglasses. Over the next four months the prescription had to be changed several times. I could drive; the prisms brought my vision together. Twice my vision tried to go back to normal. The first time for two days and the second time for two weeks. I started to have hope.  I still had the prisms and continued to see the neuro-ophthalmologist.

In January 2012 the double vision suddenly went away. I felt so grateful.

But then, one week later, I could hear a loud heartbeat in my left ear. It never stopped; I could not sleep and did not know which doctor to talk to about this. It went on for two months and I could not bear it.

I had an appointment with my neuro-ophthalmologist and mentioned this symptom. He told me I was in the right place now! He ordered an MRA.

When the results came back I was diagnosed with Carotid-Cavernous Sinus Fistula. The neuro-ophthalmologist referred me to a neurosurgeon at a major hospital. The condition was explained to me. He said it was high pressure blood flowing from the artery going into the low pressure vein system. He was going to insert coils through the carotid artery into the cavernous sinus to block the pathway. I decided to have that surgery in March 2012.

It was only five months since I had major surgery for a brain tumor.

The surgery lasted four hours. When I woke up I no longer heard the noise in my ear. This was another grateful moment in my life. I have to go for a cerebral angiogram to follow up in two months. The surgeon said it could leak again and if I have blurred vision to call immediately.

Today I have my health back. I hope my story can help lots of other people.

-Vickie

I received an email from another Cured Whoosher.  I will call him "Joe."  His story is similar to many others... the whooshing, heartbeat sound began, doctors brushed it off and prescribed nose spray, and then the patient had a choice: wait and wait to see if the symptom goes away or (the more trying and often more expensive) go with the instinct that something is wrong and find more opinions sooner rather than later.  

Like many of us, this patient listened to his instinct.  And it's a good thing he did, because the cause of his whoosh turned out to be one of the more serious, life-threatening ones if not identified and treated in time: arteriovenous malformation (AVM).

According to Mayo Clinic, an AVM is "an abnormal tangle of arteries and veins in your brain."

This patient could have died had he "waited" for the sound to go away.  In fact, as many doctors who know and understand our symptom have written, the symptom of pulsatile tinnitus very rarely goes away on its own. 

For more information on AVM's, see the Mayo Clinic site here.  

Another great resource on brain AVMs, and one written in lay terms for patients, can be found on neuroangio.org.

There is also a wonderful informative and supportive site for patients at the AVM Survivor's Network.  

AVMs are just one of many, many possible causes of pulsatile tinnitus.  And it's important to remember that most underlying causes are not as dangerous as this one.  But some of them are, so it's important to have them ruled out.  

Below is Joe's story.  Joe, thanks so much for sharing it!  Here's to a speedy recovery from your procedure and a lifetime of silence ahead! We'll be adding your story to the growing list of Cured Whoosher stories, medical reports and personal accounts of just some of the many, many possible causes, on the Cured Whooshers page.  More and more are added regulary, so check back soon. 

Here is the lastest Cured Whoosher:

I woke up on November 12th, 2012 with this heartbeat in my left ear.  I didn't know what was going on so I waited a few days and made an appointment with my primary doctor and was told I had a problem with my ear drum.  The doctor gave me medication and said everything would be fine in a couple of days.

In a couple of days I still had the problem, so I called for an appointment with an ENT and waited a week and saw him. The ENT gave me a hearing test, cleaned my ears, told me to check my blood pressure for a couple of weeks, gave me a nose spray, and said to come back in three weeks.

I waited three weeks and the problem was still there, so I decided to make an appointment with a neurologist. It took a few weeks to see the neurologist, but upon examination the doctor found something was wrong and ordered a sonogram.  That's when they saw there was a problem.

I then took a CT scan with [contrast] dye and was on my way to see a neurosurgeon a few weeks later. I was told I need to have angiogram/embolization.  I had that done on February 5th, 2013. 

When I woke up in recovery the heartbeat sound was GONE. It's been eight days since my surgery. I have a little numbness over my left forehead and nose and lip area. I was told this will go away. I was told I had ARTERIOVENOUS MALFORMATION {AVM}.
 
I was told by my doctor this would have killed me if not treated in time. I would have hemorrhaged to death.

I would like to tell everyone out there: Don't give up.

I want to thank you for your site because if I had not found it I might not have continued to try and find what my whooshing was.  You literally saved my life.  Thank you very much.

-Joe

Yes, my whooshing started after I gained significant weight.  50 Votes  16.78%

Yes, my whooshing started after I lost significant weight.  28 Votes   9.4%

No, when my whooshing started I had neither lost nor gained significant weight.  191 Votes  64.09%

Other:  29 Votes  9.73%

Total Votes: 298

Thanks for voting!  Please participate in the latest Whooshers.com poll and review previous poll results on our Polls page!

I've heard from a number of Cured Whooshers in the last two months. It's great to see and hear about pulsatile tinnitus patients getting the help they need.  I have a number of stories to share (with patients' permission, of course) and will in coming months.  

This one, written by a member of our very active Facebook group (I'll call her "Cindy"), is more about attitude than anything else.  First, I would like to repeat that Whooshers.com does not support or encourage self-diagnosis by patients - in fact we specifically discourage it.  This story, the way I read it, is not intended to condone self-diagnosis ... we need our doctors.  But what we do strongly believe, and what I think this story is really about (while it may be interpreted by some as self-diagnosis), is how to be your best advocate.  Listen to your instincts and convey them to doctors who will listen. And reach out for the support you need - whether it's family, friends, or an online support group - in the meantime.   

I have not posted in this group before, basically because I was always in pain and had no energy and I was busy doing research! But I would like to share my story.

I had a migraine for 5 months that never let up. I went to the doctor repeatedly trying to get help. They told me it was anxiety and set up appointments for me in psychology departments.

Then about 12 weeks ago, I developed a beeping, wheezing, whooshing, humming, quacking sound in my ear. It was always there and I could not get away from it. It was so loud, I asked my husband if he could hear it by putting his ear up to mine, and sure enough, he could.

I sent my doctor an email stating of this new symptom. She still told me it was anxiety. I even went into urgent care one day because I had also developed severe pain in my ear and whole left side on my head. That doctor told me I have TMJ and gave me a script for Oxicodone. I was so frustrated and every time I went to the doctor, I left crying. They were trying to diagnose me as bipolar. Of course I was depressed and had anxiety... something was going on inside of my head and I was in constant pain. Although, shortly after the noise in my ear started, my headaches actually eased up some and I had more pressure than pain.

So, with all of my frustration, I started doing my own research. I was not going to let this rest and just accept the dumb diagnosis they were giving me. My body was literally screaming at me!! I came across Whooshers.com, which fueled me to not give up. Upon hours of studying different causes for my symptoms, I came up with a cause, brain dural arteriovenous fistula (BDAVF), on a website called Neuroangio.org.

I sent my doctor an email and insisted I have an MRI and MRA. I also stated that I was at the end of my rope, and how incredibly disappointed I was in the care I was receiving. And I was at [a major medical institution]....I know, its shocking!!! Anyhow, I had the MRI and MRA, and guess what? I was diagnosed with a brain dural arteriovenous fistula. The neuro doctor told me the fistula was caused by a blood clot. Wow! So that's why I had that migraine for 5 months. If they would have diagnosed the blood clot one of the several times I went in, I would have never even gotten the fistula. Plus I'm VERY lucky that I did not have a massive stroke!

But it is what it is now and I just had the fistula fixed one week ago. I am feeling amazing. I feel like I have been reborn. No more sound, no more headache, no more anxiety, and I have been sleeping like a baby! Bottom line: Go with your gut and do NOT give up. Many doctors don't even know that there are two types of tinnitus. See a specialist - family doctors generally don't know about pulsatile tinnitus. My doctor even admitted that she has never heard of pulsatile tinnitus and has never had a patient that has had this in her 30+ years of practice!

I hope this post will help someone, somewhere!!

-Cindy

This story will be added to our Cured Whooshers page, where we list links to medical reports and personal stories of recovery from the whoosh.  For more information on brain dural arteriovenous fistulas, see Neuroangio.org.

We are patients, not doctors. However, our stories can be shared and learned from.  There is a lot of misinformation online.  But just because information is online doesn't always mean it's bad.  In some cases, it could be the opposite.  More and more medical journals post reports and abstracts to the reports online - many of which we link to on the Cured Whooshers page - and there are reputable professionals and institutions that provide good online information.  Patients: let the doctors guide us.  But doctors: listen to us when we convey our instincts.  Pulsatile tinnitus is a rare symptom.  We can, truly, learn from each other.