Another Cured Whoosher! Read Denise's Story About Dural Arteriovenous Fistula (DAVF) of the Transverse Sigmoid Sinus
Just look at this photo. Do you know how happy this photo makes me? Another Whoosher finds answers and
treatment - no more whoosh! This Cured Whoosher story and photo are submitted by a very inspiring former Whoosher. Enjoy
the silence, Denise! You deserve it. And thanks so much for sharing your story.
P.S. If you're interested in
a "Do You Whoosh" tshirt, click here!
This story has consumed my life for the past 19 months.
I am a nurse, a wife and
a mother. All of these roles consume me also, but overriding all this has been my Whoosh and all the anxiety that this Whoosh
has produced.
It all started when I noticed a whooshing noise in my left ear that was there 24 hours a day.
It was in time with my heartbeat and sounded to me like a Doppler of a baby in utero. I had a few episodes of palpitations
and fainting at the time and on one of these occasions mentioned to my doctor that I could hear my heartbeat whooshing on
my left ear. She just made some flippant comment about it, like, "just lay on the other ear, and I thought, "Well
she doesn't seem too concerned, it must be just one of those things."
After a few weeks I thought I would
google "whooshing noise in ear" because it was still there and very annoying. I found the Whooshers.com site and
thought "that's a funny name for a site," so I had a look at it......this saved my life, I believe.
I
read the stories and some of the articles. I joined the Facebook group of Whooshers. I read with horror about people who had
had this whooshing noise for years!!! I couldn't t believe this could happen to me!!! I went to my GP and she listened to
my neck and sent me for a CT with contrast to check for a glomus tumor. That came back clear, so she referred me to an ENT.
It was a 6 month wait!!
Another month or so went by and I was reading information about all the possible causes
of Pulsatile Tinnitus. I noticed that if I blew my nose hard my left ear sounded as if air was leaking out, so off to the
GP I went again. She put me onto another GP in the same surgery who had worked with ENT's in the past and was that surgery's
"ear person." She examined my ears (first time this had been done) and decided I had a dysfunctional Eustation tube.
I thought, "Oh good, maybe it is just something simple after all." She sent me away with some nasal steroidal spray
and told me to hold my nose and try to pop my ears 20 times a day!!! Which I did diligently....to no avail.
A
few weeks later I discovered that if I pressed on a little pulsating artery just behind my left ear the noise went away, but
it came back as soon as I released it. I went to see another doctor at the same practice and she phoned a radiologist and
he advised her to send me for a CT Angiogram, so I had this and it showed a twisted external carotid artery on the left side.
Also the left carotid was bigger than the right. The radiologist reporting on the film thought this would be the cause of
my PT. But the noises I was hearing just didn't sit right with this explanation for me. I was hearing the whoosh, with a squeal
that came in and out, and it would stop mid-squeal, almost like a flap was cutting off. I felt like there was something very
abnormal going on inside an artery. Also I could sometimes feel it vibrating my left eardrum, and the twisted carotid was
not anywhere near my eardrum.
I saw my GP again and asked her for a carotid ultrasound to see what was going
on. I also took in some articles I had found on the Whooshers.com website. She told me not to read rubbish on the Internet!!!
I was upset, I explained that I am a nurse (this she knew because I work with her!) and that I have a degree of which part
includes a research unit, and that the articles I was reading were evidence-based, peer-reviewed articles!! She told me that
she thought I was showing symptoms of anxiety by wanting more tests and offered to put me on a course of low dose anti-depressants!
I felt upset, angry, dis-empowered and embarrassed. I refused the medication and asked her if I could get an appointment with
another ENT as I have private health insurance and didn't want to wait another 2 months to be seen. She told me it was only
another 2 months and to wait! (After telling me I had anxiety, I found this attitude very hard and decided I would not see
her again).
I saw the ENT and he checked my hearing which was perfect, he checked my ears, which were
normal, he screwed up his face when I told him about the nasal spray and popping of the ears!! He said the tortured external
carotid was the cause of my PT, and mentioned he had never seen such a prominent carotid artery. He offered to cut out that
piece of artery or he could refer me to a Neurovascular Interventional Radiologist (NIR) who could "glue up" the
artery. I asked if what I had was life threatening and he said "no" so I told him I would live with the noise. He
said to get in touch if I changed my mind.
So, for a few months I got on with my life, thankful that
I didn't t have anything dangerous going on in my brain, even though it didn't sound very good. Then in March this year I
read a fellow Whoosher's story who had a Dural Arteriovenous Fistula (DAVF). In her story she mentioned headaches. I was struck
with this info! I have been having intense left side headaches for the last 10 years off and on, but these headaches had intensified
and were lasting for 3 days at a time for a period of 6 months. I had even been to the doctors about them, AND they had started
that intensity at the time I started Whooshing! I had never put the two together! My artery behind the left ear was pulsating
in a wider area and the whoosh was so loud I was certain it must be able to be heard by others. I put my stethoscope on the
mastoid bone behind my left ear and listened with my right ear and I could hear it! I got my daughter, who is a hairdresser
and not medically minded at all, to listen and she heard it!! So I read a bit more on DAVF's and was able to determine by
my symptoms that I was pretty sure I had a DAVF of the Transverse Sigmoid Sinus.
I spent many nights
worrying, because I knew my GP's thought I was over anxious and the ENT had said it was a twisted carotid. So I rang the ENT
and told him I would like to see the Neurovascular Interventional Radiologist after all and could he refer me on to him? He
did this and a video conference was organized with him so that I didn't t have to travel for 5 hours. In the meantime I found
an article on Whooshers.com about some signs on CT that can point to a DAVF one of which was unequal sized arteries. I emailed
this to the Neurovascular Interventional Radiologist before our video conference and told him of my suspicion.
The
interview with this man was amazing! First of all, it was the first time (other than conversations with other Whooshers) that
I had spoken to someone who understood what I was talking about! He agreed with me and thought I may have a DAVF and arranged
a Cerebral Angiogram. I had this a month later and there it was - a DAVF of the Transverse Sigmoid Sinus!!!! It also showed
an old embolus in the fistula. It was a Grade 1, which meant there was no cortical reflux, but he told me he could glue it
with Onyx and Glue with an 80%. Chance of killing the fistula because it was causing problematic pulsatile tinnitus.
I
went through a stage of being angry with my doctors for not putting together the fact that I had been going to them with intense
headaches and then Whooshing in the left ear and not doing a bit of research of their own. I feel for all the people who just
take their word, and what happens to them??
Anyway, I went in last week (8 days ago now) and had the fistula
embolised with Onyx and Glue and have been Whoosh Free ever since!! There is no noise at all. I feel so lucky that I found
the website Whooshers.com and that I was able to learn so much about persistence, courage and assertiveness from the other
Whooshers I have met on the Facebook group, without whom I would have lost my mind and I would never have persevered to become
cured.
Denise Mirco
Doctors who understand the condition will tell you that a DAVF
is a condition that demands treatment. For more info on DAVFs, see neuroangio.org.
If I didn't know better, I'd think that anyone who wishes for a diagnosis vs a clean bill of health is a little bit crazy.
Take that up a notch for anyone who wishes for a "scary" diagnosis... the big "C," a tumor, or a condition
that may not be treatable in part or in its entirety.
But when you experience a symptom that evades diagnosis in many
doctors' offices, this wish is all you have. A "clean bill of health" is often devastating to a whoosher.
A wish of identifying the cause of the symptom -no matter how bad the news is after that- often becomes the drive that keeps
us going.
The wish for a diagnosis may seem irrational, but it's actually based on the logic that if doctors know
what the cause is they're more likely to be able to fix it. I hear from whooshers every single day who are looking for
a diagnosis and for validation that they are not alone. Perhaps this drive to find a diagnosis has increased in part since
we have seen so many people with diagnoses find treatments and cures of their pulsatile tinnitus. Even for those who do not get treatment right away, finding a diagnosis often brings decreased anxiety. And that's an understatement,
trust me!
Pulsatile tinnitus patients, like patients who experience other unusual symptoms, look for answers to questions
that not many know the answers to, so a "win" may not come in the form of diagnosis, treatment, recovery in one
quick swoop; it's often a much slower process. It's helpful to celebrate the small gains.
I received an
email from a fellow whoosher named Angela who, as you'll read, was her very best advocate. Doctors had told her to "live
with it," when the cause was actually one of the more dangerous (albeit rare) that if left untreated could have been
a danger to her. She had a hunch - and the support and information - to find doctors who understand pulsatile tinnitus.
Her diagnosis is one we've seen in increased numbers in the last few years on Whooshers.com: brain dural arteriovenous fistula
(BDAVF). You can read more about BADVF here.
Obviously her story isn't over yet, and she'll update us after her surgery, but I think her enthusiasm and relief
is a good example of the complexities whooshers often face, and the simplicity in what we all seek: relief.
Relief
for many of us would be, obviously, no more whooshing, but relief is also validation, educating yourself, identifying a cause
and ruling other causes out. Relief is knowing you're not alone.
Here is Angela's story:
I
had a hysterectomy due to some cancer concerns on July 8, 2013. I woke up from anesthesia being able to hear my pulse in my
right ear. I figured it was just the anesthesia wearing off, and I did not think much about it. On Wednesday the
10th, the sound got louder and very annoying. By Friday it got so loud, I called the doctor about it. I was also
feeling dizzy and nauseated, so he told me to come in to see him. He thought that it was an ear infection due to the
tubes from incubation, and prescribed an antibiotic.
On Sunday, the sound just got louder, so I called the doctor
again. After conversing with my OBGYN and the Anesthesiologist, about what might be happening, they were puzzled, but
fearing about post op complications, sent me to the ER. The doctor in the ER took a look at my ear and sent me to an
ENT, which I saw on Monday the 15th, where they found nothing wrong with my ears. The ENT did send me for scans though,
I got an MRI/MRV/MRA.
The scans took about a week to schedule, so in the meantime I started to research.
This was the key! I found Whooshers.com and read all of the cured stories. After finding stories that sounded like mine, I researched those diagnosis in depth.
I found out what the terminology meant, I found out whether I had objective or subjective. (I have objective, you can hear
my whoosh by just listening to my right ear, you don't even need a stethoscope) I found that if I press on the artery behind
my right ear, the whoosh stops. All of this info helped me to understand what I was dealing with and which direction
to go next. After reading that mine would most typically vascular in nature, I found a neurovascular surgeon in my area.
I had a very high suspicion that my problem was BDAVF, I just needed it confirmed.
With my insurance, I do not
need a referral to see a specialist, so I called the neurovascular surgeons office and told them what I thought I had.
They got me in the next morning! I took copies of all my scans and took all of my research and hoped for the best.
Turns out, MRI/MRA/MRV scans are not good a picking up fistulas, and all he had to do was listen to the area around my ear.
He heard the whooshing, and said it was classic fistula! A cerebral angiogram would be the only test to actually see
the fistula, and he told me that he will just fix the BDAVF while they are already in there, there would be no sense in just
going in to take the pictures, just to confirm to fix it.
I am scheduled for surgery on August 7, 2013.
I realize that I am extremely lucky, having only dealt with my PT for a month. I know that some have dealt with this
for years.
My advice is to do your research, and find a doctor that will listen and who is familiar with pulsatile
tinnitus!
I will update after my surgery, and I hope that I can help someone find their cure from my story, just
as others helped me find mine!
Thank You,
Angela Campbell
UPDATE: Below
is Angela's update as of September 1, 2013
On August 6, I went in for surgery. They put me to
sleep, and the doctor used ONYX glue and radiation to fix my fistulas (turns out I had 2 bigger ones and several smaller ones)
2.5 hours later, I woke up with a headache, but NO WHOOSHING! It had worked! I spent one night in the ICU, but was able
to go home that next day. The severe headache lasted about 8 days, and now 11 days post op, I don’t need much
pain medicine to control the mild headache that I still have. Still, I am whoosh free!
I go back in February for
a cerebral angiogram to follow up with my neurologist. I will be on close watch over the next year or so to make sure that
blood flow in my head stays normal.
I had dealt with my PT for 30 days from onset to repair. The doctors have no
idea why I started hearing the fistula after my hysterectomy, but said that I was extremely lucky. Most people don’t
show any signs or symptoms before it is too late.
My advice is to do your research, and find a doctor that will
listen and who is familiar with pulsatile tinnitus!
