A Pregnant Whoosher Diagnosed - Dural Arteriovenous Fistula (DAVF) of the Cavernous Sinus - NEW UPDATES!!
*See the updates below from Hannah after her surgery and after a final checkup months after the procedure*
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!
a final update I thought I'd share with you!
I told my neurosurgeon this past visit
about your site, and he was very enthusiastic about it! Because of the "sounds" section I was able to figure out
how to record my bruit before surgery, and I also sent the recording to my doctor. I think that was the most relieving part
of this whole journey second to my diagnosis. Recording the noise I was living with and playing it back for others to hear
reminded me I was not going crazy or overreacting. Seeking treatment was one of the best things I did, and if it weren't for
other whooshers I feel certain it would have taken me twice as long to get diagnosed. It was learning from the incredible
stories of others that gave me confidence that something was quite wrong and I am so thankful for everyone that shared their
I had a follow-up angiogram June 13th and my fistula is finally
100% gone. I'm cured! The little bit that was left post surgery died off after the majority of it was occluded during the
Thank you for your dedication to helping whooshers find comfort, information, potential
avenues for treatment and most importantly, hope. I never would have thought a little noise in my ear would have had such
a dramatic impact on my life.