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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 not tinnitus.
Pulsatile tinnitus is a rhythmical noise that is synchronous with the patient's heartbeat.

One day, a doctor told me that I was the only patient he'd ever seen complain of what I described as Pulsatile Tinnitus and to "live with it."
Then I created Whooshers.com.
Today we have over 17.5 THOUSAND members in our Private Facebook Group Discussion Page.
 
Whooshers.com has received over ONE MILLION hits, and
we founded the FIRST NOT-FOR-PROFIT DEVOTED TO THE PULSATILE TINNITUS COMMUNITY at PulsatileTinnitus.com.
 
*The majority of underlying causes of Pulsatile Tinnitus CAN be identified and treated.*
 
Read on for the SUPPORT you need!

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A Pregnant Whoosher Diagnosed - Dural Arteriovenous Fistula (DAVF) of the Cavernous Sinus - NEW UPDATES!!

*See the updates below from Hannah after her surgery and after a final checkup months after the procedure*

I hear a lot from soon-to-be moms that start to whoosh and panic. For some of them, the whooshing goes away after childbirth and for some it does not.  There are a lot of challenges for pregnant whooshers... you have to be more careful about everything, so sometimes diagnostic testing has to wait. 

I received this story from a whoosher with a message to pregnant whooshers: listen to your whoosh and, most of all, yourself. After one doctor told her to "live with it" and gave her a prescription for nose spray, she took her case to a different doctor who recognized the significance of her pulsatile tinnitus and determined her whoosh was caused by a Dural Arteriovenous Fistula of the Cavernous Sinus. Guess what? NOT something you have to "live" with!  In fact, something that warrants observation and treatment!

Although she isn't yet cured because she hasn't yet had treatment (she will undergo surgery next month, and she said she'd update us!), her story is already a success because she received a diagnosis and she continues to be her best advocate.  Hannah, thanks so much for sharing your story, and good for you! I'm so happy that this site and all the stories helped you, and I am certain yours will do the same.

Here is Hannah's story:

I just wanted to say thank you for your Web site. Because so many people posted their story, I was able to recognize I was not alone, that something was in fact wrong when I began to have pulsatile tinnitus, and I stuck with it until I recently got a diagnosis - a DAVF of the cavernous sinus.

Here's my story:

I began hearing my heartbeat in my ear around my second trimester of pregnancy with my second child. I don't remember exactly when it started, but after dashing up the stairs one day I realized I could hear my heartbeat. At first I thought it was my son's, but then after I thought about it I realized that probably didn't make much sense and so I did what nobody likes to admit but everybody does, I Googled it.

Of course my Googling returned ominous stories, but I actually kind of dismissed them since pregnancy is a notorious time for weird blood flow issues, and pulsatile tinnitus didn't seem horribly uncommon for pregnant women to experience without a more serious diagnosis.

I assumed it would go away during pregnancy and didn't even mention it to my OBGYN until my six week postpartum visit, and he recommended I see an ENT, although he said one thing that set of alarm bells for me. He said, "It's not like you're going to have an aneurysm or anything." While he didn't realize it,  it sounded prophetic to me,  so I gulped and quietly scolded myself for not taking it more seriously or mentioning it sooner.

I was having intermittent headaches and it actually felt like I could hear the blood flow in my head occasionally change direction, so I decided I needed to go ahead and seek treatment to rule out anything serious.

The first ENT I saw told me I should learn to "live with it" and prescribed me Flonase. I didn't go back to him. I thought maybe I should give it more time, but then one night my husband laid his head over mine and he said "Holy crap! I hear it!"

He begged me not to let it go and insisted that anytime you can hear your blood flowing outside of your head it didn't seem good/healthy...and so the journey officially began.

I saw another ENT who thankfully recognized it as a vascular problem, and ordered an MRA. The MRA came back clear at first even to the trained eye, and so he thought we should try a few things first, although he told me that a cerebral angiogram is the gold standard for diagnosing these things.

Because I was breastfeeding I was reluctant to take medication unnecessarily, and so I went back and forth to appointments a few times until one weekend my head was hurting constantly and I was having stabbing pains. I went to the ER, and the doctor there was pretty dismissive. Exasperated I went back to the ENT and asked if we could pursue the angiogram. He agreed that may be the best route but wanted another set of eyes on my case. He sent me to a neuro-otologist at a renowned teaching hospital in my state,and that neuro-otologist told me he thought I only had a 5 % chance of having a fistula, but that it was probably best to be sure. He also reviewed my MRA and didn't see anything that concerned him.

FINALLY I arrived at a neurosurgery clinic after being referred for the angiogram by the neuro-otologist, and the neurosurgeon there explained why he agreed the angiogram was necessary to rule out a fistula, but also said he didn't think I had much of a reason to think it was one in the first place. Mmmhmm, I nodded. I already knew it was.  I would have been completely happy to be wrong and have something less serious be going on, although it would have still been frustrating not to have a diagnosis. I felt relief to finally be getting my answer.

Before the appointment was over, the neurosurgeon did mention that could see something on my MRA that the other doctors missed, something called "time of flight" pictures that showed some abnormal blood flow around my cavernous sinus. He said "we're doing the right thing" and set up my angiogram.

The angiogram showed I did in fact, have a fistula...of the cavernous sinus. It was a grade 1 fistula but it also showed an abnormal, potentially unstable arterial branch that shouldn't even be there, so on December 10th, 2013 I am scheduled to have endovascular surgery to fix the abnormal branch and the fistula.

Without this website and the stories that went along with it I would have likely dismissed my symptoms! Because of the "sounds" section I was also able to figure out how to record my pulsatile tinnitus (bruit, really) and play it for my doctors. At that point I feel like they began to take me more seriously and have compassion for me and my symptoms.

I'm so thankful for everyone that shared their stories and wish everyone the best for a diagnosis, treatment, and full recovery! And pregnant mommas especially, don't do what I did and immediately dismiss your symptoms as pregnancy related. It's better to tell your doctor(s) and play it safe and take pulsatile tinnitus seriously!

Hannah

UPDATE (12/13/13):

Just wanted to let you know I had embolization surgery on Tuesday for the DAVF. It went well. The surgeon was able to get most of the fistula, but the artery feeding the fistula looked much worse than originally thought and had formed an aneurysm. He did obliterate all of that, thankfully, and feels that what is left from the fistula isn't likely to cause any trouble. He will reevaluate in 6 months to see if he feels another embolization is necessary. I don't hear the bruit anymore, mostly. I hear just the faintest sound if I cup my hand around my ear when I place my head on my pillow, but it doesn't interfere at all with even the quietest room which is a 99.9 % improvement from where I was. I'm incredibly grateful in the end for the pulsatile tinnitus which served as the giant warning that something was wrong, and don't regret for a minute relentlessly pursuing the diagnosis, even though I had to talk to a lot of people that didn't think anything was wrong. Thanks again for your site, you are doing great things bringing awareness to this important thing so many people suffer from!

UPDATE (7/19/14): 

I have a final update I thought I'd share with you!

I told my neurosurgeon this past visit about your site, and he was very enthusiastic about it! Because of the "sounds" section I was able to figure out how to record my bruit before surgery, and I also sent the recording to my doctor. I think that was the most relieving part of this whole journey second to my diagnosis. Recording the noise I was living with and playing it back for others to hear reminded me I was not going crazy or overreacting. Seeking treatment was one of the best things I did, and if it weren't for other whooshers I feel certain it would have taken me twice as long to get diagnosed. It was learning from the incredible stories of others that gave me confidence that something was quite wrong and I am so thankful for everyone that shared their stories.

I had a follow-up angiogram June 13th and my fistula is finally 100% gone. I'm cured! The little bit that was left post surgery died off after the majority of it was occluded during the embolization procedure.

Thank you for your dedication to helping whooshers find comfort, information, potential avenues for treatment and most importantly, hope. I never would have thought a little noise in my ear would have had such a dramatic impact on my life.

Fri, November 8, 2013 | link          Comments


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RESOURCES

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 your doctors.

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. 2022;0:e000154

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

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

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