Internal Carotid Artery Aneurysm (ICA) and Another Cured Whoosher
If you experience pulsatile tinnitus and have a difficult time finding doctors to take your case seriously and not like
a case of "regular" tinnitus for which there is no known cure, consider printing out this report.
Pulsatile tinnitus was the only symptom this patient suffered. She was put on hypertension medications for
five years with no relief. No relief because the medications weren't addressing the problem. What the patient needed more
than medications and crossed fingers was a thorough and proper evaluation of her symptom. The doctors who write this
report found, upon such an evaluation, that the cause of her whoosh was an aneurysm of the internal carotid artery (ICA).
test that detected this cause in this case was an MRI. Her CT scan of the temporal bone did not reveal it. An angiogram
was used to further evaluate the problem once it was identified, and it was "successfully treated with an embolization
procedure. Another cured whoosher!
Doctors in the piece do indicate that this cause is rare, but it is one of
many possible causes that need to be considered. You don't have to experience pulsatile tinnitus and another
symptom for something to be wrong. Pulsatile tinnitus - as many patients will tell anyone who listens - is enough.
It's time more medical professional realize this.
This medical report will be added to our Cured Whooshers page, where the list of possible causes and successful treatments - and medical reports written by doctors that reiterate
the significance of pulsatile tinnitus - gets longer and longer.
Persistence and a Diagnosis: Fibromuscular Dysplasia (FMD)
There's no better way to finish off the year than a story about persistence that paid off. Here is a story submitted
by Donna, the latest Whoosher who listened to her gut and to her whoosh.
As she writes, her story isn't over - this
isn't a cured whoosher story. But it's inspirational nonetheless. Even those of us with different diagnoses can relate
to many of the ups and downs she describes. Now Donna is on the path to proper treatment, which is a great thing.
more information about Fibromuscular Dysplasia, see the FMDSA web site.
"I want to write this before the year is over in case it can help anyone out there that
perhaps is experiencing anything similar to the frustration and helplessness I felt in dealing with this condition in my body.
I apologize for the length of the story now, it was a long process, and I will try and keep it as brief as I can.
I am a 65 year old woman and consider myself a healthy, active 65. I eat mostly fresh food, exercise and have
rarely been sick until this episode. My home has been on the Big Island of Hawaii for the past 30 years.
all started in early November of 2012 when out of the blue I had a horrible toothache in the top back left side of my mouth.
I had had that last tooth repaired some years ago and the dentist told me if it goes again it will have to be a root canal.
I made a dental appointment only for them to say the tooth was fine and maybe I was grinding my teeth at night and it was
affecting the nerves and they could do a tooth guard to the tune of $300-500. No thanks.
the dentist on the 17th of Nov. and she x-rayed my sinus and said the left side was cloudy and to go to my regular doctor
which I did and he thought a sinus infection and gave me antibiotics. By the end of November I was experiencing a loud
pulsation in my left ear, headaches on the left side especially an area above and to the left of my ear, extremely tight muscles
around my ear in front, pressure inside my ear with popping and crackling noises on occasion, pain around my jaw, sinus, eye
and face on the left side only, you could draw a line down the center of my head and everything on the left side was sore.
I began experiencing migraine headaches often with visual lightning bolts before my eyes and was experiencing a definite increase
in post-menopausal hot flashes. All my symptoms were worse when lying down, especially hearing the heartbeat in my head.
Felt totally debilitated by everything.
In early December when I revisited the doctor complaining of all these
symptoms, he gave me another round of antibiotics and recommended taking Allegra D and a nasal wash daily. I did that
for a month to no avail. Each time he looked in my ear, he would comment on the fact that he was seeing a lot of fluid.
Dec. 2, 2012: 3rd day of antibiotics, had a terrible night, left ear was pounding, intense headache and was up
at 1:30 and 3am, had to sit up and sleep and still had a headache this morning.
I had an eye check and was
told all was okay. Returned to the dentist at the end of December and again they said it was not the tooth.
Went to the other side of the island and saw the original dentist that fixed the tooth and he also said the tooth was fine
and it was all caused by TMJ.
At the end of December I began to experience high blood pressure readings in the
180s/100s. My physician said they would just keep an eye on it as I never had BP problems before.
I went back to my primary doctor and he recommended a third round of antibiotics which I refused as I felt the other two doses
had little effect on what was happening. I was now having a very difficult time sleeping, the left side of my head between
my ear and eye was consistently very tight with pressure and the pulsating heartbeat I heard in my head was very loud throughout
the day and more intense at night. I had to continually say to the doctor that it was not tinnitus or ringing in the
ear but a pulsation like my heart beat.
I would sit for hours with a hot compress on the side of my head for relief.
In February, I had the pressure in my eyes checked and the eye doctor recommended eye drops for the high pressure.
I refused the recommendation as my regular doctor was on vacation and I felt that all that was going on in my head was involved
and I did not want to add this to the mix.
I again returned to my primary physician in a frustrated state, at the
end of my rope and weepy. He called in a prescription for the high blood pressure, ordered a cat scan of my sinus and
gave me information to read about sinus infections and recommended I see the staff psychologist.
came back with a polyp on the right sinus which he thought could be causing the problem and he would refer me to the ENT.
Really??? I have had not one symptom on the right side but okay it will get me another doctor’s opinion.
In the beginning of March the pulsation in my head seemed to get quieter….I referred to it as though it had moved
to another room. By the end of March I was still awaking with headaches, could not lie comfortably on either side of
my head without pain, discomfort, or loud pulsing noise. I would bunch pillows under my neck so I could lie down without
my head touching the pillow. I also had begun to exercise on a daily basis on a treadmill at home. It seemed to
make me feel better on the days I would exercise.
In April of 2013, I was at the point I didn’t even
want to talk about what was going on. I had never had anything serious regarding my health and considered myself a person
with a healthy life and eating style. And I certainly had never experienced symptoms in my body for this long a period
of time. I decided I would try acupuncture and see it I got some relief. In the meantime my regular doctor had
agreed to a head scan and new blood pressure meds.
The acupuncture was very helpful in relaxing my body and helped
me sleep better as I continued treatment throughout April.
The head scan came back normal.
At the end of May, I had the ENT appointment and before she even looked in my ear, her diagnosis of what was happening was
all blood pressure related.
At this point I decided I was just grateful that it seemed to get better daily so
rather than worry about it anymore I would just be grateful it is healing and go with that. In the meantime the pulsation
sounds were fainter, and I was still feeling pressure and pain in my head.
June 1st found me on the mainland visiting
my daughter. She wanted me to go to a doctor there and see what they said. Due to family circumstances, I did
not see Dr. Kylstra until August of 2013. She was incredibly supportive and ordered an MRI of my head. The MRI
came back no obvious problem but the radiologist noted fluid on the mastoid on the left side. I had talked to the doctor
about referring me to a neurologist but after the MRI she was hesitant and wanted me to go back to an ENT. I was again
feeling very discouraged when I left the office. My daughter was waiting for me in the car. She had searched on
the Internet with fluid on the mastoid and palpitations. What came up was an article about brain fistulas and
she was like, “Mom, this is exactly the symptoms you have been having this year.” After reading the
article, it was the first time I actually had a possible cause for all of this and I forwarded the article to Dr. Kylstra.
She was again very receptive and agreed that it sounded similar to what I was experiencing. I made an appointment to
see her and get a referral to the neurologist. The article also mentioned that if it was possibly a fistula that by
putting the stethoscope over the mastoid, the doctor should be able to hear the palpitations and she was anxious to listen.
It was a wait until the end of September to see the neurologist and then was again disappointed to hear him say he
does not even treat conditions such as this but he did have another patient with the exact same symptoms and hers was indeed
a brain fistula. He then referred me to UCSF to see Dr. Van Halbach, a neurointerventional radiologist.
The end of September found me sleeping better and I could actually lie on the side of my head for short periods of time.
I would still be awakened by head pain and pulsations sporadically during the night.
The day I was to visit
Dr. Halbach, I had my doubts about following through now that I was feeling better in all departments. But I proceeded forward
to possibly get some answers. From the time Dr. Halbach walked into the room, he was better than all my expectations.
He was incredibly informative, humble and instilled confidence in his ability to find out what was going on in my head.
I agreed to schedule the angiogram and his staff was very helpful and efficient in doing so for the next week. When
Dr. Halbach left the examining room, I cried. Finally someone said it is not normal to hear your heartbeat in your head
and understands what I have gone through for the past eleven months. The angiogram was scheduled for Oct. 3rd at UCSF.
The whole process was very strange but they couldn’t have been more professional and kind at UCSF. It
felt like I was submitting my body to some very strange science experiment.
I recall parts of the procedure and
I remember Dr. Halbach telling me that it was not a brain fistula, not something he could fix and that it was fibromuscular
dysplasia…the term would not stick in my brain, I had to ask several times that day. Since then I have
learned so much about the disease thanks to the Society of Fibromuscular Dysplasia and their website, webchats and chat groups.
It took almost the whole month of October to recover from the angiogram as it seemed to make the palpitations
at night worse, more intense headaches and fatigue.
The diagnosis came back with FMD in both carotid arteries,
and several other arteries and a healed dissection in the vertebral artery on the left side. I believe that the past
year was the healing process for the dissection.
This holiday season finds me very grateful for the health
I am experiencing. I still have palpitations in my head and neck at night though much fainter and not all the time.
I can actually sleep with my head touching the pillow though certain positions still cause discomfort and pulsatile tinnitus.
I realize it is something I will have to monitor the rest of my life.
I am returning to the mainland to
be evaluated for a possible angioplasty of my renal arteries in February.
In the meantime I am extremely
grateful for knowing what is happening in my body and that what I was experiencing that whole year had some basis for it and
it was not all in my head (though literally it was). I have learned much from the experience and know that if this should
happen again, I would be much more of an advocate for myself this time around. I know my body better than anyone and
if something this unusual is happening there is a reason and I would now demand further testing or another doctor’s
My journey here is not over, I will follow my intuition in caring for myself and wish you
all the best of health."
A Pregnant Whoosher Diagnosed - Dural Arteriovenous Fistula (DAVF) of the Cavernous Sinus - UPDATE!
*See the update below from Hannah after her surgery*
I hear a lot from soon-to-be moms that start to whoosh and
panic. For some of them, the whooshing goes away after childbirth and for some it does not. There are a lot of challenges
for pregnant whooshers... you have to be more careful about everything, so sometimes diagnostic testing has to wait.
I received this
story from a whoosher with a message to pregnant whooshers: listen to your whoosh and, most of all, yourself. After one doctor
told her to "live with it" and gave her a prescription for nose spray, she took her case to a different doctor who
recognized the significance of her pulsatile tinnitus and determined her whoosh was caused by a Dural Arteriovenous Fistula of the Cavernous Sinus. Guess what? NOT something you have to "live" with! In fact, something that warrants observation and treatment!
she isn't yet cured because she hasn't yet had treatment (she will undergo surgery next month, and she said she'd update us!),
her story is already a success because she received a diagnosis and she continues to be her best advocate. Hannah, thanks
so much for sharing your story, and good for you! I'm so happy that this site and all the stories helped you, and I am certain
yours will do the same.
Here is Hannah's story:
I just wanted to say thank you for your Web
site. Because so many people posted their story, I was able to recognize I was not alone, that something was in fact wrong
when I began to have pulsatile tinnitus, and I stuck with it until I recently got a diagnosis - a DAVF of the cavernous sinus.
Here's my story:
I began hearing my heartbeat in my ear around my second trimester of pregnancy with
my second child. I don't remember exactly when it started, but after dashing up the stairs one day I realized I could hear
my heartbeat. At first I thought it was my son's, but then after I thought about it I realized that probably didn't make much
sense and so I did what nobody likes to admit but everybody does, I Googled it.
Of course my Googling returned
ominous stories, but I actually kind of dismissed them since pregnancy is a notorious time for weird blood flow issues, and
pulsatile tinnitus didn't seem horribly uncommon for pregnant women to experience without a more serious diagnosis.
I assumed it would go away during pregnancy and didn't even mention it to my OBGYN until my six week postpartum visit, and
he recommended I see an ENT, although he said one thing that set of alarm bells for me. He said, "It's not like you're
going to have an aneurysm or anything." While he didn't realize it, it sounded prophetic to me, so I gulped
and quietly scolded myself for not taking it more seriously or mentioning it sooner.
I was having intermittent
headaches and it actually felt like I could hear the blood flow in my head occasionally change direction, so I decided I needed
to go ahead and seek treatment to rule out anything serious.
The first ENT I saw told me I should learn to "live
with it" and prescribed me Flonase. I didn't go back to him. I thought maybe I should give it more time, but then one
night my husband laid his head over mine and he said "Holy crap! I hear it!"
He begged me not to let
it go and insisted that anytime you can hear your blood flowing outside of your head it didn't seem good/healthy...and so
the journey officially began.
I saw another ENT who thankfully recognized it as a vascular problem, and ordered
an MRA. The MRA came back clear at first even to the trained eye, and so he thought we should try a few things first, although
he told me that a cerebral angiogram is the gold standard for diagnosing these things.
Because I was breastfeeding
I was reluctant to take medication unnecessarily, and so I went back and forth to appointments a few times until one weekend
my head was hurting constantly and I was having stabbing pains. I went to the ER, and the doctor there was pretty dismissive.
Exasperated I went back to the ENT and asked if we could pursue the angiogram. He agreed that may be the best route but wanted
another set of eyes on my case. He sent me to a neuro-otologist at a renowned teaching hospital in my state,and that neuro-otologist
told me he thought I only had a 5 % chance of having a fistula, but that it was probably best to be sure. He also reviewed
my MRA and didn't see anything that concerned him.
FINALLY I arrived at a neurosurgery clinic after being referred
for the angiogram by the neuro-otologist, and the neurosurgeon there explained why he agreed the angiogram was necessary to
rule out a fistula, but also said he didn't think I had much of a reason to think it was one in the first place. Mmmhmm, I
nodded. I already knew it was. I would have been completely happy to be wrong and have something less serious be going
on, although it would have still been frustrating not to have a diagnosis. I felt relief to finally be getting my answer.
Before the appointment was over, the neurosurgeon did mention that could see something on my MRA that the other doctors
missed, something called "time of flight" pictures that showed some abnormal blood flow around my cavernous sinus.
He said "we're doing the right thing" and set up my angiogram.
The angiogram showed I did in fact, have
a fistula...of the cavernous sinus. It was a grade 1 fistula but it also showed an abnormal, potentially unstable arterial
branch that shouldn't even be there, so on December 10th, 2013 I am scheduled to have endovascular surgery to fix the abnormal
branch and the fistula.
Without this website and the stories that went along with it I would have likely dismissed
my symptoms! Because of the "sounds" section I was also able to figure out how to record my pulsatile tinnitus (bruit,
really) and play it for my doctors. At that point I feel like they began to take me more seriously and have compassion for
me and my symptoms.
I'm so thankful for everyone that shared their stories and wish everyone the best for a diagnosis,
treatment, and full recovery! And pregnant mommas especially, don't do what I did and immediately dismiss your symptoms as
pregnancy related. It's better to tell your doctor(s) and play it safe and take pulsatile tinnitus seriously!
Just wanted to let you know I had embolization surgery
on Tuesday for the DAVF. It went well. The surgeon was able to get most of the fistula, but the artery feeding the fistula
looked much worse than originally thought and had formed an aneurysm. He did obliterate all of that, thankfully, and feels
that what is left from the fistula isn't likely to cause any trouble. He will reevaluate in 6 months to see if he feels another
embolization is necessary. I don't hear the bruit anymore, mostly. I hear just the faintest sound if I cup my hand around
my ear when I place my head on my pillow, but it doesn't interfere at all with even the quietest room which is a 99.9 % improvement
from where I was. I'm incredibly grateful in the end for the pulsatile tinnitus which served as the giant warning that something
was wrong, and don't regret for a minute relentlessly pursuing the diagnosis, even though I had to talk to a lot of people
that didn't think anything was wrong. Thanks again for your site, you are doing great things bringing awareness to this important
thing so many people suffer from!
Finding Answers, Trusting Experts & Making Good Medical Decisions
The video above belongs to Universal, not me. And by
the way, pulsatile tinnitus is very rarely noise-induced!
The New York Times recently published
an opinion piece titled, "Why We Make Bad Decisions," by Noreena Hertz. She wrote from a patient's perspective but with a researcher's view on how the odds are stacked against
all of us to make bad decisions when it comes to our personal medical care, unless and until we become more engaged.
ailment was not pulsatile tinnitus, but virtually every other aspect of her story will sound familiar to every whoosher: a
mystery illness; multiple doctor visits, sometimes across state lines; opinions received by "experts" about what
to do next that are often in conflict with each other. Many doctors told her nothing was wrong with her, but in the end there
was, and it was rare (sound familiar?). And even after a diagnosis, there were decisions to make about which procedure to
undergo to fix it. Decisions everywhere!
So what to do? Well, as Ms. Hertz points out, we need to ask questions. Not
only about what the cause may be, or what the solutions may be, or what the diagnostic tests reveal. We need to ask ourselves
What I thought was very interesting about her opinion piece was the notion that our biases impact
our decision-making process, not just our decisions, and that this happens all the time. Are you the type of person
to always trust a person in a white coat? Why? Do you hide your anxieties with those closest to you, and even yourself? When
it comes to medical advice, do you hear what you want to hear as well as what you don't want to hear?
there's the Internet - the never-ending information grind. You can find a web site to substantiate anything. That freckle
on your pinkie toe? If you want to find a page that confirms it's a tumor, you can. If you want to find a page that
indicates it's no more than a birthmark, you can. There is probably a page somewhere that will convince you that the
freckle is a sign that you will one day win the lottery or that your first born child will win the Nobel peace prize.
These days we have access to more information than any other time in history. Most people know that the Internet
is full of good and bad information. So how do we best process information, to decipher the "good" from the "bad?"
And - leaving aside the bad information for a moment - with so much information available, why is it still so difficult to
find clear answers?
Oh and there are also studies she references and, well, the personal stories we have heard over
and over again here on this site, of doctors misdiagnosing us time and time again, and providing misguided advice. Some
common examples to members of our community are, "You just have to live with it," before a single diagnostic test
(because they think pulsatile tinnitus is like regular tinnitus for which there is no cure) or, "Your test is clear,"
after reading a diagnostic test but not recognizing a completely separate and evident cause than the one originally being
Ms. Hertz's short piece poses the underlying question: how much should we trust the experts who tell
us what is or isn't wrong with us? Where does their confidence come from? How can we gauge that? What is our
confidence in them and with ourselves all about?
I don't think she's implying that we shouldn't trust "experts"
at all, but instead that we should be more aware of how we patients process information, including and actively engaging how
we feel into the process. Eagerness to hear what we want to hear combined with a blind faith in the "experts"
we seek help from can be a dangerous combination if we're not careful.
One aspect of the piece that I sort of disagreed
with was the tendency for patients to hear what they want to hear. I think that simplifies the issue a bit too much...
we all experience feelings of denial and difficulty facing difficult situations but that isn't always the same thing as avoiding
truth all together. Look, I know a lot of whooshers who secretly (they tell me, but otherwise it's secret) and with
every ounce of their being wish to be diagnosed with a brain tumor. And, as irrational as that may be, I get that. At least
with a brain tumor there is treatment. Anywhere you go, whoever you tell, when you say "brain tumor" there is acknowledgement
and severity and validation that a serious health issue is at play. At least with a brain tumor something can be seen
on a diagnostic film and doctors can point to it. When you have an invisible symptom that you can HEAR EVERY SECOND LIKE A
LOUD DRUM IN YOUR BRAIN, it's surprising to consider that it's anything BUT a big, fat tennis ball sized tumor in your head.
Many causes of pulsatile tinnitus evade doctors, even the "best-of-the-best." It doesn't take that many whooshers
too long to start feeling crazy when more than one doctor rolls their eyes or scribbles notes that indicate you may need psychiatric
care because you're "hearing things." Meanwhile WHOOSH WHOOSH WHOOSH... it doesn't stop.
The truth is, our
cases rarely are the result of brain tumors or other dangerous causes. But they can be, which is why we (and doctors
who understand our symptom) persist in a search for answers.
I think, for whooshers, there are two outcomes sought:
in the short term it is finding proper medical attention, evaluation, and care; and in the longer term it is finding a diagnosis
or prognosis. You need to learn to walk before you can run.
Sometimes a diagnosis feels like an impossible achievement.
And indeed sometimes a cause cannot be found. But we know that for a growing number of us, it can. Some of us don't have the insurance or money to get there though. And when you're dealing with a rare symptom like pulsatile
tinnitus, you may encounter experts who tell you before evaluating you properly that there is no diagnosis or cure. Should
you believe them? If you believe them, why do you believe them? Those questions are for each of us to answer ourselves.
again, all this boils down to being your best advocate, doing your research and finding a support network to help you help
yourself. We all need doctors, we really do, but we also need to remember to listen to ourselves.
A Journey That *Was* Pulsatile Tinnitus - Another Cured Whoosher. The Cause: Sigmoid Sinus Diverticula
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.
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
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
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.
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
My prayers go out to all who have endured this....frankly, I would rather give birth than go through
this again. Be well.