Buy a PTF Tote Today & Help The Pulsatile Tinnitus Foundation! Through Nov 24, 2024!
Our cool new PTF Tote Bags are for sale for this fundraiser! For a minimum $30 donation
through the link below you will receive this cool tote printed on both sides.
This fundraising campaign
is set to close at midnight ET Nov 24, 2024. Orders will ship 12 working days after. Expected delivery Dec 11-16, 2024, in
time for the holidays!
Pulsatile Tinnitus Webinars & SleepPhones & Community Updates, Oh MY!
The whoosh beats on and we've been busy working for our community. Here are some highlights!
The Pulsatile Tinnitus Foundation & Whooshers.com September 22, 2024 Webinar was a great success. Four doctors from varying specialties discussed
our cases and provided insight into the growing number of Transverse Sinus Stenosis and Intracranial Hypertension cases that
involve Pulsatile Tinnitus. View the recording from this and ALL other PTF webinars on our NEW PTF Webinars page.
The Pulsatile Tinnitus Foundation (PTF) is so excited to announce our renewed partnership with SleepPhones™
and our very own PTF branded SleepPhones™ products. Now taking pre-orders. Available in Classic/Wireless/Headband Only styles OR the Effortless style. A PORTION OF PROCEEDS FOR EACH PURCHASE WILL GO STRAIGHT TO OUR COMMUNITY! Thank you to the folks at SleepPhones.
We'll soon be posting an updated product review, but here is a link to our prior one.
We'll soon have some SWAG for sale just in time for the holidays. Gift some of our Foundation items to your friends
and family this season!
Recent Medical Literature on Some Pulsatile Tinnitus Cases and Causes
Dear Whooshers Community:
We've been a bit delinquent posting new material
here, but we've been working hard behind the scenes for our community at The Pulsatile Tinnitus Foundation! Check us out! And keep an eye here for more frequent updates!
In the meantime, for your reading
pleasure, here is a small collection of recent medical literature on the topic of pulsatile tinnitus!
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.
