In 2009, one day out of the blue, a woman in New York City started hearing a whooshing noise in her head that was in sync
with her heartbeat.
Her doctors told her it was "all in her head," and it would go away on its own,
and that it was nothing to warrant concern or testing. Many told her it was "tinnitus." <--Sound familiar?
She
had a hunch that they were wrong. They were! She was a WHOOSHER.
She found doctors who would inquire some more.
Meanwhile, she collected medical reports published around the world that described her symptom - a rare one (or, now we know,
not so rare but, in fact, rarely diagnosed) called pulsatile tinnitus.
She launched this site, Whooshers.com, mainly to keep all the info she collected in one place. People found it. Connecting with other Whooshers
and sharing medical reports with fellow patients and doctors were KEY to her sanity, and her eventual diagnosis.
Tens
of thousands of unique users and millions of hits later, Whooshers.com remains the primary forum for Whooshers worldwide,
united. With our resources and community support, Whooshers around the world have found guidance and built the confidence
to persist toward answers. And thousands have discovered the underlying cause of their pulsatile tinnitus and successful treatment
(no more whoosh!) as a direct result.
The Pulsatile Tinnitus Foundation (PTF) was established in 2019 to get some real,
official work done for the Pulsatile Tinnitus community, including educating medical professionals to help Whooshers, everywhere.
Pusaltile tinnitus is a symptom, not a condition. In the vast majority of pulsatile tinnitus
cases, the underlying cause CAN be identified and treated. Anyone who says differently has some reading to do.
The
PTF website has been in the works for a long time, and now, it's up!
Report: "Emergence of Venous Stenosis as the Dominant Cause of Pulsatile Tinnitus"
A study just published in the American Heart Association Scientific Medical Journal, "Stroke: Vascular and Interventional
Neurology,"by a group of doctors
at NYU Langone Medical Center in New York City reports on Venous Stenosis.
The study, which provides an overview
of over 200 cases of patients with pulsatile tinnitus, includes helpful tables of info summarizing the overall characteristics,
final diagnoses, and details including how many patients could manipulate the sound by compression of the jugular.
One
notable observation (among many) is this:
"In nearly two
thirds of cases, VSS was associated with another venous anatomic variation such as a diverticulum or high‐riding jugular
bulb (Table 5). In virtually none of these cases were these variants believed to be responsible for generating the sound
itself, in our experience."
Have a high jugular bulb? We have discussed this for many years and suspected,
based on extensive (albeit non-scientific) feedback from our community members that a diagnosis of "high jugular bulb"
is merely a collateral observation and usually not the actual cause of the pulsatile tinnitus.
The study also
mentions Whooshers.com and our advocacy for the pulsatile tinnitus community over the past 13 years:
"Despite its completely different nature, patients with PT continue to be widely misunderstood
by the medical community and lumped with the nonpulsatile group, virtually guaranteeing delay in appropriate diagnosis. In
large part because of patient advocacy, the International Classification
of Diseases, Tenth Revision (ICD‐10) now includes
diagnostic codes for PT. Online support forums such as www.whooshers.com and #whooshers on Facebook have partnered with various medical societies to promote physician and patient education.
This increased symptom awareness and online resources have resulted in both more patients presenting for evaluation and for
this evaluation to be concentrated in PT high‐volume centers."
Special thanks to NYU Langone, an institution that has partnered with Whooshers.com from the
early days. And to all of the authors of this report - thank you! Doctors there have helped so many in our community,
and their expertise and encounters with pulsatile tinnitus over time are crucial to educating the medical community today
and beyond.
Each report is validation for the patient who is told it's "all in your head" or "you
have to live with it" before a full workup.
If you are experiencing pulsatile tinnitus, SHARE reports like
this with your doctors! We must continue to be our best advocates!
This is a fascinating report of a young man who reported swelling of the neck and difficulty swallowing, along with pulsatile
tinnitus. The urgency of the situation was not recognized at first, but lucky for this patient it was before it was too late.
The writers indicate that this case may be a first:
"Pulsatile tinnitus has never been reported
as a presenting feature of an aneurysm of the extracranial part of the internal carotid artery (ICA)."
Though
it's unfortunate that the report in numerous instances refers to pulsatile tinnitus as tinnitus (pulsatile tinnitus is not
tinnitus!), the writers of the report couldn't have said this better:
"This case highlights the importance
of a thorough history and examination in identifying a rare cause of pulsatile tinnitus."
Here at Whooshers.com and The Pulsatile Tinnitus Foundation, the world's ONLY public charity devoted exclusively to the
pulsatile tinnitus community worldwide, we have been a bit deliquent in updates to this site, but we are working super hard
behind the scenes on some exciting projects.
Our Facebook group page continues to grow, with more than 11,000 members from countries all over the world. Hundreds of new members join each
week. No one is alone in this!
Almost immediately after The Pulsatile Tinnitus Foundation became an official
public charity in December 2019, the pandemic thrusted each of us into an unimaginable whirlwind of crisis, a crisis that
for some of us persists almost two years later. In our community, patients have had to postpone medical consults and
cancel diagnositic testing and procedures. Medical professionals - the many doctors, nurses, and assistants devoted to our
community - have been propelled into a work environment of unimaginable grief, stress and risk.
Even
in pre-pandemic times, experiencing pulsatile tinnitus - learning what it is, learning what it is not, learning what can be
done about it and finding where there is help - was almost too much for some of us to bear, especially at the beginning of
our journey for answers. And, still, each and every day, even during the pandemic, more people continue to wake up hearing
a sound that is in sync with their heartbeat/pulse that can't immediately be explained.
We,
The Pulsatile Tinnitus Foundation, want you to know that we are still here.
We continue
to support all the patients in our community and our medical professional friends. We want and need to do more. We need to
remain focused on our community and help one another.
WILL YOU SUPPORT US?
We simply cannot do the important work we want to do for you, without you.
What's notable here is that the authors suggest that this condition
is caused by trauma. This means an injury of some kind. We've often discussed here the many circumstances that lead to the
onset of pulsatile tinnitus. Sometimes it is spontaneous and just starts one day out of the blue. For other patients, it begins
right after or soon after some sort of accident or force to the head or neck area. If your pulsatile tinnitus started after
an accident it could be a big clue as to the cause. This particular study is just one possibility. Search "injury"
on this site for more.
"Arteriovenous fistula of the superficial temporal vessel is a rare
condition with incidence of 0.5% to 2.0%; 75% of superficial temporal arteriovenous fistula is caused by blunt, penetrating
or iatrogenic trauma."
It's also notable that this patient and study are based in
Ethiopia. There truly are doctors all over the world that are seeing and studying pulsatile tinnitus patients. Hats
off to them.
This will be added to our Cured Whooshers page, where you may see a collection of medical reports on pulsatile tinnitus causes.
Another Possible Pulsatile Tinnitus Cause: Carotid Artery-Cochlear Dehiscence (CCD)
We recently heard from a Whoosher diagnosed with Carotid Artery-Cochlear Dehiscence (CCD), who correctly noted that this
rare diagnosis was not on our Cured Whooshers page, our running list of possible pulsatile tinnitus causes.
Here is a bit of Jennifer's story:
"Hello! I have bilateral pulsatile tinnitus and have been diagnosed with superior semicircular
canal dehiscence in both ears, but also, and more interestingly, bilateral carotid-cochlear dehiscence. That is, my carotid
arteries should be separated from my cochleae by a layer of bone. But that bone is missing, allowing my arteries to actually
touch the cochleae.
Since the cochlea
is the hearing organ in your ear, the loud whooshing I hear 24 hours a day is likely the blood rushing through my carotid
arteries. I do have SSCD symptoms like autophony, hyperacusis and ear fullness, but the whooshing is the most bothersome symptom.
My excellent doctors have proposed doing SSCD repair on one ear to see if
my quality of life can be improved somewhat. But the carotid-cochlear dehiscences are inoperable.
I’m doing fine for the most part! I lead a pretty normal life. I do
use earplugs in some situations when there is just too much sound. I thankfully do not have the vertigo associated with the
SSCD. I have hearing loss that will likely progress at some unknown rate, which perhaps is the most daunting part. I also
can’t do some parts of my job that involve a stethoscope (I’m a Vet Tech). The only treatment at this point is
to just keep my blood pressure under control."
For more information on this underlying cause,
see:
