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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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Persistence and a Diagnosis: Fibromuscular Dysplasia (FMD)

There's no better way to finish off the year than a story about persistence that paid off.  Here is a story submitted by Donna, the latest Whoosher who listened to her gut and to her whoosh.

As she writes, her story isn't over - this isn't a cured whoosher story. But it's inspirational nonetheless.  Even those of us with different diagnoses can relate to many of the ups and downs she describes. Now Donna is on the path to proper treatment, which is a great thing.  

For more information about Fibromuscular Dysplasia, see the FMDSA web site.  

"I want to write this before the year is over in case it can help anyone out there that perhaps is experiencing anything similar to the frustration and helplessness I felt in dealing with this condition in my body.  I apologize for the length of the story now, it was a long process, and I will try and keep it as brief as I can. 

I am a 65 year old woman and consider myself a healthy, active 65.  I eat mostly fresh food, exercise and have rarely been sick until this episode.  My home has been on the Big Island of Hawaii for the past 30 years.

This all started in early November of 2012 when out of the blue I had a horrible toothache in the top back left side of my mouth.  I had had that last tooth repaired some years ago and the dentist told me if it goes again it will have to be a root canal.  I made a dental appointment only for them to say the tooth was fine and maybe I was grinding my teeth at night and it was affecting the nerves and they could do a tooth guard to the tune of $300-500.   No thanks. 

Revisited the dentist on the 17th of Nov. and she x-rayed my sinus and said the left side was cloudy and to go to my regular doctor which I did and he thought a sinus infection and gave me antibiotics.  By the end of November I was experiencing a loud pulsation in my left ear, headaches on the left side especially an area above and to the left of my ear, extremely tight muscles around my ear in front, pressure inside my ear with popping and crackling noises on occasion, pain around my jaw, sinus, eye and face on the left side only, you could draw a line down the center of my head and everything on the left side was sore.  I began experiencing migraine headaches often with visual lightning bolts before my eyes and was experiencing a definite increase in post-menopausal hot flashes.  All my symptoms were worse when lying down, especially hearing the heartbeat in my head.  Felt totally debilitated by everything.

In early December when I revisited the doctor complaining of all these symptoms, he gave me another round of antibiotics and recommended taking Allegra D and a nasal wash daily.  I did that for a month to no avail.  Each time he looked in my ear, he would comment on the fact that he was seeing a lot of fluid. 

Dec. 2, 2012: 3rd day of antibiotics, had a terrible night, left ear was pounding, intense headache and was up at 1:30 and 3am, had to sit up and sleep and still had a headache this morning.

I had an eye check and was told all was okay.  Returned to the dentist at the end of December and again they said it was not the tooth.   Went to the other side of the island and saw the original dentist that fixed the tooth and he also said the tooth was fine and it was all caused by TMJ.

At the end of December I began to experience high blood pressure readings in the 180s/100s.  My physician said they would just keep an eye on it as I never had BP problems before.

In January, I went back to my primary doctor and he recommended a third round of antibiotics which I refused as I felt the other two doses had little effect on what was happening.  I was now having a very difficult time sleeping, the left side of my head between my ear and eye was consistently very tight with pressure and the pulsating heartbeat I heard in my head was very loud throughout the day and more intense at night.  I had to continually say to the doctor that it was not tinnitus or ringing in the ear but a pulsation like my heart beat.

I would sit for hours with a hot compress on the side of my head for relief.

In February, I had the pressure in my eyes checked and the eye doctor recommended eye drops for the high pressure.  I refused the recommendation as my regular doctor was on vacation and I felt that all that was going on in my head was involved and I did not want to add this to the mix.

I again returned to my primary physician in a frustrated state, at the end of my rope and weepy.  He called in a prescription for the high blood pressure, ordered a cat scan of my sinus and gave me information to read about sinus infections and recommended I see the staff psychologist. 

The scan came back with a polyp on the right sinus which he thought could be causing the problem and he would refer me to the ENT.  Really???  I have had not one symptom on the right side but okay it will get me another doctor’s opinion.

In the beginning of March the pulsation in my head seemed to get quieter….I referred to it as though it had moved to another room.  By the end of March I was still awaking with headaches, could not lie comfortably on either side of my head without pain, discomfort, or loud pulsing noise.  I would bunch pillows under my neck so I could lie down without my head touching the pillow.  I also had begun to exercise on a daily basis on a treadmill at home.  It seemed to make me feel better on the days I would exercise. 

In April of 2013, I was at the point I didn’t even want to talk about what was going on.  I had never had anything serious regarding my health and considered myself a person with a healthy life and eating style.  And I certainly had never experienced symptoms in my body for this long a period of time.  I decided I would try acupuncture and see it I got some relief.  In the meantime my regular doctor had agreed to a head scan and new blood pressure meds.

The acupuncture was very helpful in relaxing my body and helped me sleep better as I continued treatment throughout April. 

The head scan came back normal. 

At the end of May, I had the ENT appointment and before she even looked in my ear, her diagnosis of what was happening was all blood pressure related.

At this point I decided I was just grateful that it seemed to get better daily so rather than worry about it anymore I would just be grateful it is healing and go with that.  In the meantime the pulsation sounds were fainter, and I was still feeling pressure and pain in my head.

June 1st found me on the mainland visiting my daughter.  She wanted me to go to a doctor there and see what they said.  Due to family circumstances, I did not see Dr. Kylstra until August of 2013.  She was incredibly supportive and ordered an MRI of my head.  The MRI came back no obvious problem but the radiologist noted fluid on the mastoid on the left side.  I had talked to the doctor about referring me to a neurologist but after the MRI she was hesitant and wanted me to go back to an ENT.  I was again feeling very discouraged when I left the office.  My daughter was waiting for me in the car.  She had searched on the Internet with fluid on the mastoid and palpitations.   What came up was an article about brain fistulas and she was like,  “Mom, this is exactly the symptoms you have been having this year.”  After reading the article, it was the first time I actually had a possible cause for all of this and I forwarded the article to Dr. Kylstra.  She was again very receptive and agreed that it sounded similar to what I was experiencing.  I made an appointment to see her and get a referral to the neurologist.  The article also mentioned that if it was possibly a fistula that by putting the stethoscope over the mastoid, the doctor should be able to hear the palpitations and she was anxious to listen.

It was a wait until the end of September to see the neurologist and then was again disappointed to hear him say he does not even treat conditions such as this but he did have another patient with the exact same symptoms and hers was indeed a brain fistula.  He then referred me to UCSF to see Dr. Van Halbach, a neurointerventional radiologist. 

The end of September found me sleeping better and I could actually lie on the side of my head for short periods of time.  I would still be awakened by head pain and pulsations sporadically during the night. 

The day I was to visit Dr. Halbach, I had my doubts about following through now that I was feeling better in all departments. But I proceeded forward to possibly get some answers.  From the time Dr. Halbach walked into the room, he was better than all my expectations.  He was incredibly informative, humble and instilled confidence in his ability to find out what was going on in my head.  I agreed to schedule the angiogram and his staff was very helpful and efficient in doing so for the next week.  When Dr. Halbach left the examining room, I cried.  Finally someone said it is not normal to hear your heartbeat in your head and understands what I have gone through for the past eleven months.  The angiogram was scheduled for Oct. 3rd at UCSF.

The whole process was very strange but they couldn’t have been more professional and kind at UCSF.  It felt like I was submitting my body to some very strange science experiment.

I recall parts of the procedure and I remember Dr. Halbach telling me that it was not a brain fistula, not something he could fix and that it was fibromuscular dysplasia…the term would not stick in my brain,  I had to ask several times that day.  Since then I have learned so much about the disease thanks to the Society of Fibromuscular Dysplasia and their website, webchats and chat groups.

It took almost the whole month of October to recover from the angiogram as it seemed to make the palpitations at night worse, more intense headaches and fatigue.

The diagnosis came back with FMD in both carotid arteries, and several other arteries and a healed dissection in the vertebral artery on the left side.  I believe that the past year was the healing process for the dissection.
 
This holiday season finds me very grateful for the health I am experiencing.  I still have palpitations in my head and neck at night though much fainter and not all the time.  I can actually sleep with my head touching the pillow though certain positions still cause discomfort and pulsatile tinnitus.  I realize it is something I will have to monitor the rest of my life. 

I am returning to the mainland to be evaluated for a possible angioplasty of my renal arteries in February. 

In the meantime I am extremely grateful for knowing what is happening in my body and that what I was experiencing that whole year had some basis for it and it was not all in my head (though literally it was).  I have learned much from the experience and know that if this should happen again, I would be much more of an advocate for myself this time around.  I know my body better than anyone and if something this unusual is happening there is a reason and I would now demand further testing or another doctor’s opinion. 

My journey here is not over, I will follow my intuition in caring for myself and wish you all the best of health."
Mon, December 30, 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.