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Do You Hear What I Hear? Fri, July 31, 2015 | link          Comments

Superior Semicircular Canal Dehiscence (SSCD) - Rare or Rarely Diagnosed?

A recent story published by HuffingtonPost.co.UK explores the inspiring story of nurse-to-be Beth Rye, a 24-year-old woman diagnosed with Superior Semicircular Canal Dehiscence (SSCD). 

Pulsatile tinnitus is a common symptom of SSCD.

We've seen a number of high profile SSCD stories in recent years.  See the Cured Whooshers page for others.  Other symptoms beyond pulsatile tinnitus sometimes include vertigo, "bouncy" eyes (as described by the patient in the story), an increased sense of one's voice (autophony) and hypersensitivity to sounds like dishes clanking in the sink.

The piece indicates that the patient and her symptoms were initially and consistently disregarded.  She was told to "live with it" and doctors prescribed a nasal spray.  She was persistent, however, and after 10 months she received a proper diagnosis.  Another example of being your best advocate!  Now, with that diagnosis, she hopes to receive treatment. 

A lot more is known now about SSCD than even a few years ago, so we hope this patient finds treatment and soon. 

For more information on SSCD click here.

To read the story, see:

"Woman Left Bedbound By Tiny Hole In Ear Reveals How It's 'Impossible' To Lead An Ordinary Life," Natasha Hinde, June 12, 2015.

Sat, June 20, 2015 | link          Comments

Treatment of Venous Pulsatile Tinnitus in Younger Women - Internal Jugular Bulb Ligation

Somewhat controversial is ligation of the internal jugular bulb as a cure for pulsatile tinnitus.  What's most interesting to me about this recently published report is the observation over time - a relatively long time for cases of pulsatile tinnitus: 24 years. 

Below is the abstract (summary) for the report. As always, we encourage patients to share abstracts and reports like these with their doctors.  Special thanks to the doctor who brought this one to my attention.  

"Treatment of Venous Pulsatile Tinnitus in Younger Women," Berguer R, Nowak P, Ann Vasc Surg. 2015 May;29(4):650-3. doi: 10.1016/j.avsg.2014.12.039. Epub 2015 Mar 6.

Sun, May 31, 2015 | link          Comments

Announcing the UCSF Multidisciplinary Pulsatile Tinnitus Clinic!

GREAT news for the pulsatile tinnitus community!

University of California, San Francisco (UCSF) Medical Center has recently launched and opened the UCSF Multidisciplinary Pulsatile Tinnitus Clinic, focused on clinical care and research aimed at treating patients with pulsatile tinnitus.  

Patients are encouraged to call 415-353-1863 to inquire about being seen in the Clinic.  

Read about one of the Clinic's co-directors, Dr. Matthew Amans, HERE

Sat, April 25, 2015 | link          Comments

Another Pulsatile Tinnitus Cause: Jugular Paraganglioma (JPG)

Lately I have heard from a number of people diagnosed with jugular paragangliomas, "JPG" (aka glomus jugulare, jugular foramen paraganglioma, temporal bone paraganglioma, glomus tumor).  As listed on a number of medical sites, pulsatile tinnitus is a symptom of this condition.  This site from Columbia University Medical Center describes some symptoms and (albeit brief) examples of proposed treatments.

[Note to Columbia University Medical Center: pulsatile tinnitus is NOT ringing in the ears!]

From the medical literature published recently, it appears that, perhaps like many other conditions, the discussion about proposed treatments for JPGs is evolving.  The links below include recent abstracts of medical reports that discuss methods of management and treatment of JPGs. As with many other causes, many patients diagnosed with jugular paraganglioma are faced with a choice of treatment, and that choice can often be a very difficult one to make.  There are a number of medical reports available online about the dilemma: surgery? radiotherapy? radiosurgery?

When you're a whoosher, a diagnosis of the underlying cause of our symptom is a big accomplishment.  This is just one of many, many possible causes of pulsatile tinnitus.  When the diagnosis is relatively rare, the suggested treatment may not be so straightforward.  These patients need medical support - and emotional support - to help them make the best personal decision. 

All of these abstracts are available online, with links to the full reports available from major medical publications. Share them with your doctors!  

Sources:

"Contemporary Management of Jugular Paragangliomas," Wanna GB, Sweeney AD, Haynes DS, Carlson ML, Otolaryngol Clin North Am. 2015 Apr;48(2):331-341. doi: 10.1016/j.otc.2014.12.007.

"Observation and partial targeted surgery in the management of tympano-jugular paraganglioma: a contribution to the multioptional treatment," Mazzoni A, Zanoletti E. Eur Arch Otorhinolaryngol. 2015 Mar 31, Otolaryngology, University Hospital, Padua, Italy.

"Paragangliomas of the Head and Neck: A Pictorial Essay," Jerry C. Lee, MD, Ajay Malhotra, MD, Henry Wang, MD, PhD, Per-Lennart Westesson, MD, PhD, DDS, Division of Diagnostic and Interventional Neuroradiology Department of Imaging Sciences University of Rochester Medical Center, Rochester, New York, 2007.

"Evolving Concepts in the Management of Jugular Paraganglioma: A Comparison of Radiotherapy and Surgery in 88 Cases," Patrice Tran Ba Huy, M.D., Romain Kania, M.D., Michèle Duet, M.D., Bernadette Dessard-Diana, M.D., Jean-Jacques Mazeron, M.D., and Rania Benhamed, M.D., Skull Base. 2009 Jan; 19(1): 83–91.

Tue, March 31, 2015 | 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 2013-2014, by state. NEW! (This PDF file will download when you click here)

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.

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.