The Pulsatile Tinnitus Foundation, Inc.
$1,000
Raised
1
Donation
$10,000
Goal
The Pulsatile Tinnitus Foundation (PTF) (https://pulsatiletinnitus.com/) manages and shares information about pulsatile tinnitus, a rare symptom described as a rhythmic sound that is in sync with the heartbeat or pulse.
While the underlying causes of pulsatile tinnitus cross over a number of various medical specialties, the majority of them are identifiable and treatable. Indeed, some causes are lethal if not addressed quickly, and pulsatile tinnitus may be the sole underlying symptom. However, pulsatile tinnitus is often incorrectly referred to and often diagnosed as “tinnitus,” for which an entirely different medical workup is warranted.
PTF provides support, via social networking platforms, collections of medical reports, and databases of medical professionals familiar with pulsatile tinnitus cases, to educate patients and the medical community. We connect patients to doctors, and doctors to their colleagues, each a crucial component of treatment, since pulsatile tinnitus merits a multi-disciplinary approach. We support the medical community devoted to pulsatile tinnitus studies. We advocate for increased awareness, in monthly awareness campaigns and others. We facilitate patient support meetings and doctor-led webinars across the United States and worldwide. We monitor trends in algorithmic recommendations for diagnostic imaging. We encourage and enable patients to be their best advocates, equipping them with information to share with their doctors, who may have never seen a patient with this symptom in their practice. We use technology to support patients’ experiences with a rare symptom – sharing how it impacts daily life – and to educate medical professionals with limited training to identify pulsatile tinnitus causes and the complex workup warranted by the symptom.
The website Whooshers.com is operated and managed by The Pulsatile Tinnitus Foundation, Inc., as our focal online forum and network that currently links thousands of individuals in over 60 countries.
Donor Wall13
Rita Arens | $100
Anonymous
Thank you for hosting the latest webinar. It is helpful to have this information in pressing for further investigation into the cause of this condition
maryann vitiello | $25
After attending the latest webinar I feel much better prepared to seek quality care and treatment for my pulsatile tinnitus. Thank you so much!
Andrew | $450
Thank you for all your support and for creating such a wonderful community of patients and doctors
Holly Strutt | $259.92
Keep doing your important work!
Ronette (Corte) Carotenuto | $311.84
Almost five years ago I was diagnosed with pulsatile tinnitus in my right ear. I hear my heartbeat 24/7. I was married on 11/1/21 and my Mom has given this donation for a wedding gift. I am forever grateful to Emma for leading me to Dr. Shapiro. I can't be cured - but I continue to "stay strong" - our Facebook group has helped so very much. "Stay Strong" everyone!
Triss | $26.27
I don’t know where I would be without this forum. Thank you for everything you have done and continue to do.
Ian Turner
Thank you for all you've done and continue to do.
Rene | $25
Thank you for providing a space for everyone to discuss and learn about PT, the discussions are so helpful. Without this group, I would not have received contact details to two neurointerventional radiologists who diagnosed my PT (currently on my treatment journey now). Like Lauren, I am based in Australia and was deemed "normal" by specialists like ENTs for 3 years. This group provided me with contact details for Dr Kenneth Liu in the US and Dr Geoffrey Parker in Sydney (also based at the Royal Prince Alfred Hospital and works along side Rodney Allan). Both Dr Liu and Dr Parker diagnosed me with left-sided occipital venous sinus stenosis as the likely cause of my PT, and I will be determining if I am a stent candidate! I am trying to give back to the group by helping other PT sufferers where I can, especially those from Australia. This group is helping medical professionals realise that PT is a symptom of many underlying conditions which can actually be both diagnosed and even treated in certain cases. This group has also allowed prominent PT researchers to have direct contact with the PT community, allowing them to gain better understanding of the symptoms and challenges PT patients face. Keep up the good work!
Anonymous | $100
I am overwhelmed with beginning to address my PT, though your website and the Webinar have been very helpful. Question: Are you going to update the Top Ten Pulsatile Tinnitus Tips For Doctors? Thank you for all you do!
Lauren | $200
Hello, I am Lauren from Sydney Australia. Thank you for your wonderful website, the information on hand and the doctor webinars. It is an amazing website. I had severe Pulsatile Tinnitus in my left ear associated with dizziness/lightheadness but no more now! I had a minnimally invasive operation yesterday with a Vascular Neurosurgeon for a Venous Stenosis Sinus Stent for Pulsatile Tinnitus. I have had the issue for 1year and a half. I went through the whole ENT road, was going crazy, the pounding in my ear was driving me nuts and after listening to your website and the Drs, I went down the Vascular journey and straight away the Surgeon saw the narrowing of my veins was causing the issue. If anyone from Australia needs a Vascular Neuosurgeon for this issue contact: Dr Rodney Allan at Royal Prince Albert Hospital in Sydney Australia who can do these types of operations. The pounding in my ear went away instantly after the operation, I cannot believe it! Im on blood thinners for 3months and then asprin. Thank you Whooshers.com and the Doctors on the Webinars who explained the proceedures! This site pushed me to find answers! Lauren Sydney, Australia
Rachel | $52.23
Thank you for all you do for PT patients!
Jennifer Kaufmann | $30