WHOOSHERS Unite! (A Poetic Acronym)
By Sandra Lemon Simmons
Whenever it gets still and quiet Hope
drains that I’ll find a peaceful rest Obscured only slightly beneath my breathing Oblivious
to everyone else Seeking ever constantly for some relief I wrestle Hindered by too many
interrupted thoughts Every heartbeat in my chest reverberated like a mighty River flowing.
Leaves me lost. So, I am a one amongst the many Whooshers waiting, wondering bound to
afflicted others by this shared malady Misunderstood by most friends and loved ones and too often Dismissed and misdiagnosed by many in medical communities. Now as mis-education is finally
being surmounted Our combined voices lift high for singular recognition Many have found
cures from several varied diagnoses Both surgical and medicinal relief from our shared PT condition. We Whooshers welcome your candid input Testimonies of each one’s urgent plight There is comfort in the sharing, for with each victory gained… There is new hope for peaceful
nights! DivinelyDowanna! August 6, 2013 12:37 p.m. Sat, January 23, 2016 |
A Whoosher Medical Mystery: A Pulsatile Tinnitus Case Highlighted and Solved!
What could be better than starting the year off with some excellent pulsatile tinnitus publicity?
For the second
The New York Times has highlighted a pulsatile tinnitus case in their column, "Think Like a Doctor."
A patient's case and struggle for a diagnosis for strange symptoms that stump doctors is described, diagnostic test reports
are displayed and then the comments section welcomes ideas as to what the heck may be going on to cause the patient's symptoms.
This week's mystery was about another pulsatile tinnitus patient whose symptoms eluded even some of the best doctors around. As you'll
read, the patient had extensive diagnostic testing and a number of possible causes were ruled out.
Like many pulsatile
tinnitus patients, this one went to an ear specialist after whooshing for a long time. We know that the underlying causes
of whooshing only rarely have anything to do with the ear(s) but it's completely logical for patients to start with an ear
specialist. The problem is, when the ear specialist gives us the all clear (because ear issues typically ARE absent),
often we're sent on our way home without a referral to ANOTHER type of specialist to complete the warranted medical workup.
But the ear specialist in this patient's story, who realized he was stumped and had exhausted his knowledge of the culprit,
did the right thing: Instead of sending the patient on his way, he referred the patient for diagnostic imaging and then to
other specialists to review the patient's films. Without the diagnostic testing, the patient would never ever have been
But the success of a test not only depends on whether the test may detect the cause - it
also depends on the eyes looking at the films. Unfortunately for the patient, again and again, the doctors who reviewed
the films gave the patient the all clear. The films were circulated some more, however, and finally a doctor isolated the
causes - two of them! - and the patient was finally on the road to treatment and silence.
And speaking of the
patient, whose identity was obviously not revealed in the story, KUDOS TO YOU for your persistence seeking a diagnosis and
for being your best advocate. The end of the piece indicates that it was the PATIENT, not a doctor, who self-referred
to the radiologist who ended up diagnosing the cause. Roaming around with all your films in a big place like New York
City with a symptom as wacky as pulsatile tinnitus, and dragging yourself from appointment to appointment after doctors one
by one tell you over and over that "you're fine" and that nothing is evident on your films, is NOT EASY. Good
for him for hanging in there. Enjoy the much-deserved silence!
Unlike tinnitus, many causes of pulsatile tinnitus
can be identified and treated. Our mantra here on
Whooshers.com is CIRCULATE YOUR FILMS ! Yet again, we have a wonderful example of a patient who
did just that and, because of it, is now enjoying the wonderful consequence of silence! SPOILER ALERT:
The diagnosis has been posted, and a link to the details is below. UPDATE: The diagnosis was twofold: Fibromuscular Dysplasia (FMD) and a fistula between the patient's vertebral artery and vein. And, unlike
any other time, NOT ONE READER guessed the proper diagnoses. The doctor in the piece did though, and the patient is
now Cured Whoosher.
You can read more about FMD and fistulas on our
Cured Whooshers page, where individual medical reports and personal stories from real Whooshers are posted.
The last "Think Like a Doctor" column that highlighted pulsatile tinnitus was just as interesting! Sat, January 9, 2016 |
How did you learn about Whooshers.com?
Whooshers.com Promote Your Page Too
Diagnosis and Treatment of Pulsatile Tinnitus, Dr. Maksim Shapiro, NYU Neurointerventional Radiology Section, NYU Langone
Medical Center - neuroangio.org
Radiation Dose Chart - American Nuclear Society (ANS) Public Information Resources Page: Click here for an interactive dose
chart for various medical diagnostic tests. A downloadable and printable version is also available on this page. Discuss with
Find a Neurotologist: American Neurotological Society (ANS) Membership Roster
Find a Neurointervention Specialist: Society of Neurointerventional Surgery (SNIS)- Click on "Doctor Finder"
Find a Neuro-Ophthalmologist: The North American Neuro-Ophthalmology Society (NANOS)
Site: Neuroangio.org - Your neurovascular education and information resource. Patient Information.
UCSF Pulsatile Tinnitus Clinic
Article: "Pulsatile Tinnitus: Differential Diagnosis and Radiological Work-Up," Sjoert A. H. Pegge, Stefan C. A. Steens, Henricus
P. M. Kunst, and Frederick J. A. Meijer, Department of Radiology and Nuclear Medicine, Radboud University Medical Center Nijmegen
and Department of Otorhinolaryngology, Radboud University Medical Center Nijmegen, The Netherlands. (SEE TABLE 1).
Presentation: "Algorithm for Evaluation of Rhythmic Tinnitus," Douglas E Mattox, MD, Patricia Hudgins, MD, Jahrsdoerfer Lecture,
University of Virginia, March 25, 2010. (This link is to the abstract/summary)
Presentation: "Imaging of the Patient with Tinnitus," Mary Beth Cunnane MD, Massachusetts Eye and Ear Infirmary, Dec 2013.
(NEW! Mentions Pulsatile Tinnitus and Whooshers.com. Republished with Permission.)
Article: "Imaging in Pulsatile Tinnitus: Diagnostic Pearls and Potential Pitfalls," B. S. Purohit, R. Hermans, K. Op de beeck;
1SINGAPORE/SG, 2Leuven/BE, European Society of Radiology, 2014.
Article: "Imaging In Pulsatile Tinnitus : When Should It Ring A Bell?" G. Bathla1, V. Chong; 1singapore/SG, 2Singapore/SG,
European Society of Radiology, 2012."
Article: "Pulsatile Tinnitus: Contemporary Assessment and Management," Aristides Sismanis, Current Opinion in Otolaryngology
& Head & Neck Surgery: October 2011 - Volume 19 - Issue 5 - p 348357 doi: 10.1097/MOO.0b013e3283493fd8, Otology and neuro-otology:
Edited by Myles L. Pensak.
NEW Article: "Emergence of Venous Stenosis as the Dominant Cause of Pulsatile Tinnitus," Eytan RazErez NossekDaniel Jethanamest,
Vinayak Narayan, Aryan Ali, Vera Sharashidze, Tibor Becske, Peter K. Nelson, Maksim Shapiro, Originally published8 May 2022
https://doi.org/10.1161/SVIN.121.000154, American Heart Association Journal - Stroke: Vascular and Interventional Neurology.
Article: "Temporal Bone: Vascular Tinnitus," William W.M. Lo and M. Marcel Maya, Vascular, pp.1361-1374, 2003.
Article: "Diagnostic Clues in Pulsatile Tinnitus (Somatosounds)," Carlos Herraiza and José Miguel Aparicioa, Unidad de Acúfenos;
Instituto ORL Antolí-Candela, Madrid, Spain; Unidad de Otorrinolaringología, Fundación Hospital Alcorcón, Madrid, Spain; Otorrinolaringología,
Hospital Quirón, Madrid, Spain, Acta Otorrinolaringol Esp. 2007;58(9):426-33. This is a link to the article abstract.
Article: "How I Struggled with (PULSATILE) Tinnitus," The Story of Actor Graham Cole, Daily Mail Online, January 10, 2007.
Article: "I Got Lifesaving OP for Whooshing Thanks to US Help," David Powell, Daily Post UK, DPW West, Feb 19, 2013.
Article: "Vital Signs: An Unwelcome Ringing," by Dr. Christopher Linstrom, Discover Magazine, April 2010. (About a cured patient
with pulsatile tinnitus symptoms!)
Article: "Tinnitus Highlights Poor Doctor Patient Communication," Martin Young, MBChB, FCS(SA), Diagnosis and Treatment, KevinMd.Com,
Article: "Pulsatile Tinnitus: Recent Advances in Diagnosis," Aristides Sismanis MD, Wendy R. K. Smoker, MD, The Laryngoscope,
Volume 104, Issue 6, pages 681-688, June 1994. ABSTRACT (Summary)
Article: "Neuroradiologic Assessment of Pulsatile Tinnitus," Department of Otolaryngology Head and Neck Surgery Loyola University
Medical Center, Maywood, IL: Dr Kircher and Dr Leonetti; Department of Otolaryngology-Head and Neck Surgery Henry Ford Health
System, Detroit, MI: Dr Standring; Presented at the Annual Meeting of the American Academy of Otolaryngology-Head Neck Surgery,
Chicago, IL. Sept. 22-24, 2008. (CLICKING THIS LINK WILL DOWNLOAD THE PDF FILE)
Article: "Imaging of Tinnitus: A Review," Jane L. Weissman, MD and Barry E. Hirsch, MD, Radiology, August 2000.
Article: "Imaging in Pulsatile Tinnitus," G. Madania and S.E.J. Connor, Clinical Radiology, Volume 64, Issue 3, Pages 319-328
Article: "Imaging of the Patient With Tinnitus," Mary Beth Cunnane MD, Massachusetts Eye and Ear Infirmary, December 31, 2013.
(NEW! Mentions Whooshers.com and PULSATILE tinnitus as well.)
Article: "Imaging of Pulsatile Tinnitus: A Review of 74 Patients," Guner Sonmez, C Cinar Basekim, Ersin Ozturk, Atilla Gungor,
Esref Kizilkaya, Clinical Imaging, Volume 31, Issue 2, Pages 102-108 (March 2007). (This is an abstract/summary-you have to
pay to see the article in its entirety)
Article: "Pulsatile Tinnitus: A Review of 84 Patients," Daniel Waldvogel, Heinrich P. Mattle, Matthias Sturzenegger and Gerhard
Schroth, Journal of Neurology, Volume 245, Number 3, 137-142, DOI: 10.1007/s004150050193, November 12, 1997.
Article: "Role of Angiography in the Evaluation of Patients With Pulsatile Tinnitus," Edward J. Shin, MD; Anil K. Lalwani,
MD; Christopher F. Dowd, MD, Laryngoscope 110: November 2000. (PDF FILE)
Article: "Angioplasty and Stenting for Intractable Pulsatile Tinnitus Caused by Dural Venous Sinus Stenosis: A Case Series
Report," Li Baomin, Shi Yongbing, and Cao Xiangyu, Dept of Neurosurgery, Chinese PLA General Hospital, Beijing, Otol Neurotol.
35.366-370. Dec 2014.
Article: "CT Angiography as a Screening Tool for Dural Arteriovenous Fistula in Patients with Pulsatile Tinnitus: Feasibility
and Test Characteristics," J. Narvid, H.M. Do, N.H. Blevins and N.J. Fishbein, American Journal of Neuroradiology 32:446-453,
Article: "Brain Dural Arteriovenous Fistula (BDAVF)," Patient Information, www.NeuroAngio.org
Article: "Usefulness of C-Arm Cone-Beam Computed Tomography in Endovascular Treatment of Traumatic Carotid Cavernous Fistulas:
A Technical Case Report," Sato, Kenichi MD, PhD; Matsumoto, Yasushi MD; Kondo, Ryushi MD, PhD; Tominaga, Teiji MD, PhD, Neurosurgery:
August 2010 - Volume 67 - Issue 2 - p 467470.
Article (Abstract): "A Convenient Sonographic Technique for Diagnosis of Pulsatile Tinnitus Induced by a High Jugular Bulb,"
The American Institute of Ultrasound in Medicine, Minoru Nakagawa, MD, Norimitsu Miyachi, MLT and Kenjiro Fujiwara, MD, Department
of Neurosurgery (M.N., K.F.) and Clinical Laboratory (N.M.), Kosei General Hospital, Hiroshima, Japan, J Ultrasound Med 27:139-140
Article: "Surgical Treatment of the High Jugular Bulb in Patients with Ménières Disease and Pulsatile Tinnitus," V. Couloigner,
A. Bozorg Grayeli, D. Bouccara, N. Julien and O. Sterkers, European Archives of Oto-Rhino-Laryngology Volume 256, Number 5,
224-229, DOI: 10.1007/s004050050146 (ABSTRACT)
Article: "Brain AVM," (arteriovenous malformation), MayoClinic.com
Article: "Chiari Malformation," MayoClinic.com
Article: "Ménière's Disease," National Institute on Deafness and Other Communication Disorders (NIDCD)
Article: "TMJ Disorders," MayoClinic.com
Article: "Anemia," American Society of Hematology, Hemotology.org
Article: "Pseudotumor Cerebri," (also called Benign Intracranial Hypertension) MayoClinic.com
Article: "Pulse-Synchronous Tinnitus," The Intracranial Hypertension Research Foundation
Article: "Coarctation of the Aorta," MayoClinic.com
Article: "Man Cured of Hearing His Eyeballs Move," www.bbc.co.uk, July 27, 2011. Superior Canal Dehiscence Syndrome (SCDS)
Article: "Diagnosis and Cure of Venous Hum Tinnitus," Laryngoscope, Chandler JR, 93(7):892-5, July 1983.
Article: (Abstract) "Sinus Wall Reconstruction for Sigmoid Sinus Diverticulum and Dehiscence: A Standardized Surgical Procedure
for a Range of Radiographic Findings," Dr. DJ Eisenman, Department of Otorhinolaryngology - Head & Neck Surgery, University
of Maryland School of Medicine, Baltimore, Maryland; Otology Neurotology, 32(7):1116-9; September 2011.
Article: (Abstract) "Awake Embolization of Sigmoid Sinus Diverticulum Causing Pulsatile Tinnitus: Simultaneous Confirmative
Diagnosis and Treatment," Park YH, Kwon HJ, Department of Otolaryngology-Head and Neck Surgery, Chungnam National University
School of Medicine, Daejeon, Republic of Korea, Interv Neuroradiol. 2011 Sep;17(3):376-9. Epub 2011 Oct 17. (NEW!)
Article: "A New Therapeutic Procedure for Treatment of Objective Venous Pulsatile Tinnitus," Sanchez TG, Murao M, Medeiros
HRT, Kii M, Bento RF, Caldas JG, et al. Int Tinnitus J. 2002;8(1):54-57.
Article: "Glomus Tympanicum," The New England Journal of Medicine, Volume 362:e66, Number 22, June 3, 2010.
Article: "Resolution of Pulsatile Tinnitus Following an Upper Mediastinal Lymph Node Resection," Wang YZ, Boudreaux JP, Campeau
RJ, Woltering EA, South Med J. 2010 Apr;103(4):374-7.
Article: (Abstract) "Dissection of the Internal Carotid Artery After SCUBA-Diving: A Case Report and Review of the Literature,"
Franz Hafner, MD,* Thomas Gary, MD,* Froehlich Harald, MD,* Ernst Pilger,* Reinhard Groell, PD,w and Marianne, Brodmann* "Neurologist.
17(2):79-82, March 2011. (NEW!)
Article: "Carotid-Cavernous Sinus Fistula," Bobby S. Korn, M.D., Ph.D., and Kang Zhang, M.D., Ph.D., N Engl J Med 2011; 364:e15,
February, 24, 2011. (WARNING: GRAPHIC IMAGES)
Article: "Pulsatile Tinnitus Cured by Mastoidectomy," Duvillard C, Ballester M, Redon E, Romanet P., Department of Otolaryngology-Head
and Neck Surgery, Hôpital Général, Dijon, France, Ann Otol Rhinol Laryngol, September 2004.
Article: "Pulsatile Tinnitus: A Symptom of Chronic Subclavian Artery Occlusion," Marcio Francisco Lehmann, Charbel Mounayer,
Goetz Benndorf, Michel Piotin, and Jacques Moret, AJNR Am J Neuroradiol 26:19601963, September 2005 (PDF).
Article: "Carotid Endarterectomy Relieves Pulsatile Tinnitus Associated with Severe Ipsilateral Carotid Stenosis," J Kirkby-Bott,
H.H Gibbs, European Journal of Vascular & Endovascular Surgery, Volume 27, Issue 6, Pages 651-653, June 2004.
Article: "MR Angiography Imaging of Absence Vertebral Artery Causing of Pulsatile Tinnitus: A Case Report," *Mehmet Cudi Tuncer;
**Yekta Helbest Akgül & *Özlen Karabulut,* Department of Anatomy, Faculty of Dicle University, 21280, Diyarbak¹r, Turkey.**
Department of Otorhinolaryngology, Özel Diyarbakr Hospital, 21100, Diyarbakr, Turkey, International Journal of Morphology,
v.28 n.2 Temuco Jun. 2010."
Article: "Endovascular Treatment of Sigmoid Sinus Aneurysm Presenting as Devastating Pulsatile Tinnitus. A Case Report and
Review of Literature." Mehanna R, Shaltoni H. Morsi H, Mawad M., Interv Neuroradiol. 2010 Dec;16(4):451-4. Epub 2010 Dec 17.
"Pulsatile Tinnitus Caused by an Aneurysm of the Transverse-Sigmoid Sinus: A New Case Report and Review of Literature," Lenck
S, Mosimann PJ, Labeyrie MA, Houdart E., Department of Neuroradiology, hôpital Lariboisière, 2, rue Ambroise-Paré, 75010 Paris,
France, J Neuroradiol. 2012 Oct;39(4):276-9. doi: 10.1016/j.neurad.2012.02.001. Epub 2012 Sep 29. (NEW!)
Article: "Intractable Tinnitus and Sensorineural Deafness Cured by Surgical Correction of Coarctation of Aorta," S. Rathinam,
A.M. Pettigrew, J.C.S. Pollack, Interactive Cardiovascular and Thoracic Surgery 3:431-433 (2004).
Article: "Pulsatile Tinnitus," Don McFerran FRCS Consultant Otolaryngologist Essex County Hospital, Colchester, British Tinnitus
Association, October 2007.
Article: "Pulsatile Tinnitus and Dural Arteriovenous Malformation (Dural AVM)," G. A. J. Morrison, The Journal of Laryngology
& Otology (1989), 103:1073-1075 Cambridge University Press (ABSTRACT).
Article: "Medical Mystery: Giving Birth Didn't Ease a Woman's Dangerous Hypertenstion," Sandra G. Boodman, The Washington
Post, October 17, 2011.
Article: "That Noise Wasn't Just Tinnitus," Sandra G. Boodman, Special to The Washington Post, July 7, 2009
Article: "What's That Noise In Her?" H. Lee Kagan, Discovery Magazine, January 2006. (About a patient with arteriovenous malformation
(AVM) and her doctor whose patience and persistence paid off).
Article: "The 'Rare' Disease That Isn't," Thomas M. Burton, The Wall Street Journal, June 27, 2009
Article: "Diseases and Conditions/ Fibromuscular Dysplasia (FMD)," Cleveland Clinic. Lists symptoms, details, treatments,
and resources including Whooshers.com.
Article: Unraveling Pulsatile Tinnitus in FMD: A Report of the United States Registry For Fibromuscular Dysplasia."
Video: "A Rare Disease That May Be Underdiagnosed," Thomas M. Burton, June 26, 2009 (Hear an example of a whooshing sound
in this short video)
Whooshers.com Pulsatile Tinnitus Sounds (Real Ones Recorded by Real Whooshers!)
Audio: Having trouble describing the sound you hear to others? Listen to this collection of sounds that whoosh and see if
you can find a match to yours! Demonstrations: Heart Sounds & Murmurs, from the University of Washington Department of Medicine
Whooshers.com Review: SleepPhones- Soft, comfortable headphones to help mask the whoosh for a good night's sleep.