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Whoosh [hwoosh, hwoosh, woosh, woosh] noun 1. a loud, rushing noise, as of air or water: a great whoosh as the door opened. verb (used without object) 2. to move swiftly with a gushing or hissing noise: gusts of wind whooshing through the trees. verb (used with object) 3. to move (an object, a person, etc.) with a whooshing motion or sound: The storm whooshed the waves over the road. Also, woosh. Origin: 1840-1850; imit.

Pulsatile tinnitus is a rhythmical noise that is synchronous with the patient's heartbeat.

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Finding Answers, Trusting Experts & Making Good Medical Decisions

The video above belongs to Universal, not me.  And by the way, pulsatile tinnitus is very rarely noise-induced! 

The New York Times recently published an opinion piece titled, "Why We Make Bad Decisions," by Noreena Hertz. She wrote from a patient's perspective but with a researcher's view on how the odds are stacked against all of us to make bad decisions when it comes to our personal medical care, unless and until we become more engaged.

Her ailment was not pulsatile tinnitus, but virtually every other aspect of her story will sound familiar to every whoosher: a mystery illness; multiple doctor visits, sometimes across state lines; opinions received by "experts" about what to do next that are often in conflict with each other. Many doctors told her nothing was wrong with her, but in the end there was, and it was rare (sound familiar?). And even after a diagnosis, there were decisions to make about which procedure to undergo to fix it. Decisions everywhere!

So what to do? Well, as Ms. Hertz points out, we need to ask questions. Not only about what the cause may be, or what the solutions may be, or what the diagnostic tests reveal. We need to ask ourselves questions. 

What I thought was very interesting about her opinion piece was the notion that our biases impact our decision-making process, not just our decisions, and that this happens all the time. Are you the type of person to always trust a person in a white coat? Why? Do you hide your anxieties with those closest to you, and even yourself? When it comes to medical advice, do you hear what you want to hear as well as what you don't want to hear?  

And then there's the Internet - the never-ending information grind. You can find a web site to substantiate anything. That freckle on your pinkie toe? If you want to find a page that confirms it's a tumor, you can.  If you want to find a page that indicates it's no more than a birthmark, you can.  There is probably a page somewhere that will convince you that the freckle is a sign that you will one day win the lottery or that your first born child will win the Nobel peace prize. 

These days we have access to more information than any other time in history.  Most people know that the Internet is full of good and bad information. So how do we best process information, to decipher the "good" from the "bad?" And - leaving aside the bad information for a moment - with so much information available, why is it still so difficult to find clear answers?

Oh and there are also studies she references and, well, the personal stories we have heard over and over again here on this site, of doctors misdiagnosing us time and time again, and providing misguided advice.  Some common examples to members of our community are, "You just have to live with it," before a single diagnostic test (because they think pulsatile tinnitus is like regular tinnitus for which there is no cure) or, "Your test is clear," after reading a diagnostic test but not recognizing a completely separate and evident cause than the one originally being investigated.

Ms. Hertz's short piece poses the underlying question: how much should we trust the experts who tell us what is or isn't wrong with us? Where does their confidence come from? How can we gauge that? What is our confidence in them and with ourselves all about? 

I don't think she's implying that we shouldn't trust "experts" at all, but instead that we should be more aware of how we patients process information, including and actively engaging how we feel into the process. Eagerness to hear what we want to hear combined with a blind faith in the "experts" we seek help from can be a dangerous combination if we're not careful.

One aspect of the piece that I sort of disagreed with was the tendency for patients to hear what they want to hear. I think that simplifies the issue a bit too much... we all experience feelings of denial and difficulty facing difficult situations but that isn't always the same thing as avoiding truth all together.  Look, I know a lot of whooshers who secretly (they tell me, but otherwise it's secret) and with every ounce of their being wish to be diagnosed with a brain tumor. And, as irrational as that may be, I get that. At least with a brain tumor there is treatment. Anywhere you go, whoever you tell, when you say "brain tumor" there is acknowledgement and severity and validation that a serious health issue is at play.  At least with a brain tumor something can be seen on a diagnostic film and doctors can point to it. When you have an invisible symptom that you can HEAR EVERY SECOND LIKE A LOUD DRUM IN YOUR BRAIN, it's surprising to consider that it's anything BUT a big, fat tennis ball sized tumor in your head. Many causes of pulsatile tinnitus evade doctors, even the "best-of-the-best." It doesn't take that many whooshers too long to start feeling crazy when more than one doctor rolls their eyes or scribbles notes that indicate you may need psychiatric care because you're "hearing things." Meanwhile WHOOSH WHOOSH WHOOSH... it doesn't stop.

The truth is, our cases rarely are the result of brain tumors or other dangerous causes. But they can be, which is why we (and doctors who understand our symptom) persist in a search for answers. 

I think, for whooshers, there are two outcomes sought: in the short term it is finding proper medical attention, evaluation, and care; and in the longer term it is finding a diagnosis or prognosis. You need to learn to walk before you can run.

Sometimes a diagnosis feels like an impossible achievement. And indeed sometimes a cause cannot be found. But we know that for a growing number of us, it can. Some of us don't have the insurance or money to get there though. And when you're dealing with a rare symptom like pulsatile tinnitus, you may encounter experts who tell you before evaluating you properly that there is no diagnosis or cure. Should you believe them? If you believe them, why do you believe them? Those questions are for each of us to answer ourselves.

Once again, all this boils down to being your best advocate, doing your research and finding a support network to help you help yourself.  We all need doctors, we really do, but we also need to remember to listen to ourselves.  

Sat, October 19, 2013 | link          Comments


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RESOURCES

NEW: Click Here to Download the PDF, "Top Ten Pulsatile Tinnitus Tips for Doctors." Review it with your GPs and ENTs!

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 your doctors.

Find a Neurotologist: American Neurotological Society (ANS) Membership Roster

Find a Neurointervention Specialist: Society of Neurointerventional Surgery (SNIS)- Click on "Physician Locator"

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

Blog: Tales From Clark Street

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: "Emma's Story," A Personal Account of Pulsatile Tinnitus, The British Tinnitus Association (BTA).

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.

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, November 2010.

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 (March 2009).

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, March 2011.

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 0278-4297, 2008.

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

Audio: FREE White Noise from White Noise MP3s.com

Audio: SimplyNoise.com

Whooshers.com Review: SleepPhones- Soft, comfortable headphones to help mask the whoosh for a good night's sleep.

Click Here for the International Association for Suicide Prevention (IASP)

Replace "ringing" with "whooshing," and here it is: our theme song.