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Old 01-03-2007, 12:06 AM   #1
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Excellent story about Dr Epley - well worth a read

Doctor and invention outlast jeers and threats
Vertigo - John Epley's chair conquers dizziness, wins acceptance and has a business plan, thanks to his daughter
Sunday, December 31, 2006
JOE ROJAS-BURKE
The Oregonian

He is a doctor and innovator. Years ago, he took aim at a medical curse that has disabled millions of people and defied treatment. He came up with a cure that was astonishingly simple. No surgery. No pills.

Now, think: Would his colleagues cheer his stroke of ingenuity by spreading the news -- and practice -- of the treatment to relieve suffering?

No. Inexplicably, they rejected him, ridiculed him, heaved accusations that threatened his license to practice medicine.

Portland ear surgeon John Epley persevered quietly. His daughter grew up largely unaware of his struggle. When by chance she found out, the discovery changed her life -- and his.

Stirring disbelief

John Epley's stooped shoulders and gentle eyes gave him a turtlish look. He wore a thickly knotted necktie and wrinkled sport coat. No amount of combing could tame the stubborn cowlick in his short hair.

His audience of ear surgeons muttered skeptically and shook their heads. Few at the October 1980 meeting in Anaheim, Calif., believed Epley's claim to have developed a cure for the most common cause of chronic vertigo.

In any given year, tens of thousands of people seek treatment for the disorder's strange, crippling attacks. Provoked by a casual tilt or turn of the head, the victim's surroundings whirl. The eyeballs twitch involuntarily. Nausea overwhelms the senses. On-and-off bouts may torment a sufferer for years.

Physicians were baffled. The best they could offer as treatment was a drastic last resort: surgically destroying nerves to the inner ear, impairing patients' balance and possibly their hearing.

Epley proposed an elegant alternative.

His talk concluded with a demonstration, a young woman acting as his patient. Epley and his research collaborator, audiologist Dominic Hughes, began by tilting the woman flat on her back, her head hanging over the end of an exam bench. Hughes cradled her head in his hands and rotated it about 45 degrees to his right, then he and Epley rolled the woman's head and shoulders back to the left in a counterclockwise move that ended with her face down. In a final move, Hughes and Epley lifted the woman to a sitting position.

And that was it.

By then, audience members were walking out. One doctor stomped up to Epley and slapped down a comment card before exiting. He'd scrawled, "I resent having to waste my time listening to some guy's pet theory."

Solving the riddle

Epley diagnosed many patients at his Glisan Street medical office with a condition known by a cumbersome name: benign paroxysmal positional vertigo, or BPPV.

A Viennese physician first described the disorder in 1921. Decades later, nobody had nailed down the cause or devised a satisfactory treatment.

To Epley, it was a challenge ripe for picking.

By nature, the Klamath Falls native was a hands-on problem-solver. In college, he tinkered in the physics laboratories at the University of Oregon. His zeal for experimentation continued after he earned a medical degree from the school now called Oregon Health & Science University. During his surgical residency at Stanford University Medical Center, he helped develop an early cochlear implant to restore hearing. He opened a solo practice across the street from Providence Portland Medical Center in 1965.

Though no longer connected to a university, he devised surgical methods and instruments -- innovations that medical journals published. As he dreamed up ideas, he'd sometimes forget the patients cramming into his waiting room, Hughes observed.

The audiologist shared Epley's fascination with dizziness. With no graduate degree, Hughes was an unlikely collaborator. Epley had hired him to do workplace hearing tests. But Hughes had been a research assistant at the University of Chicago Medical School and had spent three years studying hearing and balance problems at a Japanese university. Over a long lunch two or three times a week, the two debated the latest studies and hashed out their own ideas.

To maintain balance, the brain coordinates messages from the eyes, from muscles pulling against gravity and from motion sensors inside the inner ear's maze of fluid-filled canals.

Another researcher had reported finding chalklike particles in the inner ears of vertigo patients and proposed that these particles clumped onto ears' motion sensors to trigger false sensations of motion. But the hypothesis failed to explain the on-again-off-again nature of positional vertigo: If particles stuck on sensors, why did dizziness ever go away?

Epley and Hughes reasoned that the particles must float freely. Head movements might shift them, causing a siege of dizziness until the particles settled or shifted. It might be possible, they figured, to move the particles where they wouldn't cause mischief. Since the particles are denser than inner-ear fluid and sink, gravity could do the work.

Hughes used plastic tubing to build a model of the inner ear. To simulate loose particles, he put BBs in the coiled tubes. He and Epley flipped and turned the hand-size model as they might a kid's puzzle, to work out a sequence of moves to reposition the tiny metal balls.

They began testing the moves on people straightaway, tilting and rolling them on an exam bench. Odd as the treatment sounded, frustrated patients were keen to try it.

The first two or three subjects seemed to gain immediate relief. At first, Epley wasn't too impressed. The condition often clears up by itself, he recalls reminding himself. He didn't know whether he had made any difference.

But when the treatment cured several more patients, including one who had endured dizziness for a decade, he and Hughes realized they'd hit upon a great discovery.

Hard sell

In Portland, some of Epley's colleagues were so skeptical that they began to question his medical skills. Some doctors stopped referring patients.

On one occasion, Epley scheduled time in an operating room at Providence Portland Medical Center so that a patient could be put under anesthesia while he and Hughes performed the repositioning maneuvers. The patient was an elderly woman disabled by vertigo; she had to be pushed around in a wheelchair with her head cradled in a brace. Epley applied a handheld vibrator behind the affected ear to help mobilize the particles while rolling the patient.

The anesthesiologist glared at Epley, dumbfounded. He later pulled Epley aside. "I don't think you know what you are doing," Epley recalls him saying.

But when the woman awoke, her vertigo was gone. The results amazed even Hughes. The anesthesiologist, impressed in a different way, filed a complaint at the hospital. The hospital's audit committee soon dropped the matter, but tensions resurfaced.

By 1983, when Epley had cured several more cases, he and Hughes submitted their first article. The Journal of Otology rejected it, explaining that the treatment defied established theory. The two revised the paper and submitted it to other journals but got nowhere. Hughes struck out on his own after completing his doctoral degree.

Epley labored on. Rejection drove him to work harder to convince colleagues. He no longer had time for hobbies or socializing, his wife, Norma, and daughter Cathy noted.

In front of hostile crowds, he kept presenting his findings. Ken Aebi, a medical supply salesman in Portland who'd become Epley's friend, felt helplessly embarrassed for him. Epley struggled at the lectern, reading too much from notes and occasionally wandering off on tangents. Some doctors rolled their eyes. Others laughed openly.

The surgeon launched into a project to design and build a motorized chair that would enable him to better treat balance disorders, even in patients with fragile necks or who were obese.

He tracked cases he treated, using handwritten index cards for a database. In 1992, he submitted a report to the journal of the American Academy of Otolaryngology. In it, he described the 100 percent cure rate of his "canalith repositioning" maneuver in 30 patients.

The journal published the report. More than 10 years after Epley took on BPPV, he'd finally gained the recognition that was vital to acceptance among his peers. But the stamp of approval did not sway the skeptics. Many doctors rejected or ignored Epley's breakthrough, even in his hometown.

 
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Old 01-03-2007, 12:07 AM   #2
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Re: Excellent story about Dr Epley - well worth a read

Desperate patient

At an emergency room in 1995, a doctor couldn't figure out the cause of a sudden attack of vertigo that struck Joseph Delahunt.

He had crawled from the living room of his North Portland house out to his car so that his wife could drive him to the hospital. Delahunt hung his head out the window and vomited most of the way. An Air Force veteran in his mid-50s, he was healthy and active -- selling real estate and practicing yoga -- until the attacks started.

Delahunt consulted his family doctor, then tried a neurologist and an ear, nose and throat doctor. They prescribed motion-sickness drugs and other medicines that didn't help much. One told him he'd have to learn to live with the "benign" condition. None mentioned Epley's treatment. His wife discovered it on the Internet.

Delahunt's condition worsened. To avoid unbearable, spinning nausea, he sat as still as he could in a reclining chair. For nearly three months, he left the recliner only to go the bathroom.

At Epley's office, an assistant helped Delahunt down a long hallway to a gray-walled room with closed blinds. An ungainly apparatus filled much of the room. Inside a giant steel ring hung a padded chair that reminded Delahunt of an ejection seat. Motors, gears and drive-chains were rigged to flip and twirl the chair like a carnival ride.

Delahunt stepped up to a platform and into the chair. An assistant clipped straps across his chest and ankles. She covered his eyes with a bulky mask. It contained a video camera to track his eyes. She clipped a vibrator behind his ear. It buzzed gently, more lightly than a cell phone on vibrate.

"Are you comfortable?" the assistant asked. Delahunt nodded, grateful for the Valium he'd taken.

Epley fingered a joystick controller to tilt the chair back until Delahunt was face up. A flick of the joystick rotated Delahunt like a barbecue skewer. On a black-and-white computer display, Epley monitored his patient's eyes for a characteristic twitching movement triggered by positional vertigo. He repeated the series of calibrated tilts and whirls. Then he swung the chair upright and face-forward.

No waves of vertigo struck when Delahunt moved his head. The nausea had cleared. He stopped taking the medications other doctors prescribed and resumed his life.

Threat to livelihood

In Portland, many doctors still dismissed Epley as a crank.

The conflict flared into a crisis in 1996. The Oregon Board of Medical Examiners notified Epley that he was under investigation for alleged unprofessional conduct.

His medical license and livelihood were on the line.

At issue was Epley's development and use of another cutting-edge technique: the infusion of a drug to deaden nerves suspected of causing inner-ear disturbances. The case dragged on for five years before hearing officer Marilyn Litzenberger ruled.

Epley kept his feelings to himself, even at home. But his wife and daughter knew that the investigation weighed heavily. Epley's stoop worsened, they could see. His health faltered. He had to break into his retirement savings to pay for his legal defense.

Epley's accusers, two Portland physicians, testified that Epley was administering the nerve-deadening drugs recklessly, based on inadequate diagnostic testing.

Epley's main defender, a Harvard-affiliated specialist from Boston, described Epley as "a forward thinker who has been right virtually every time he stuck his neck out."

Litzenberger left no doubt whom she found most credible, portraying the board's medical experts as hostile, one-sided and ill-informed. In the summer of 2001, Litzenberger dismissed all claims.

By then, a review article in the prestigious New England Journal of Medicine had credited John Epley as the inventor of the "treatment currently recommended" for positional vertigo. In clinical trials, about 90 percent of patients were cured by a single treatment. Doctors applying treatment around the world referred to it as the "Epley maneuver."

Daughter's mission

Epley's daughter, Cathy, may have never heard the full story of her father's travails if not for a terrible coincidence.

On Sept. 11, 2001, Cathy was attending a medical convention in Denver, hoping to find job leads. At 43, she had worked as an editor for a business magazine during the Internet boom, then switched to politics, managing anti-tax activist Bill Sizemore's unsuccessful campaign for governor in 1998. She moved on to a job in marketing with a medical device startup. But the firm couldn't afford to keep her on full time. So she tagged along with her father to Denver.

News of multiple jet crashes halted the convention. With airliners grounded, convention goers scrambled to book rental cars from a hopelessly inadequate supply. Cathy Epley accepted an offer to share a ride back to Portland with her father's old friend Ken Aebi and his wife. They headed west trying to make sense of the terrorist strikes, compulsively gleaning news from the radio. As the drive wore on, the conversation turned to John Epley and his struggles.

Cathy Epley felt enraged.

But as she absorbed the details, her anger solidified into something more like resolve: She had to help her father get his due. The rest of the drive, Epley spent talking with Aebi about ways to help her father earn money from his inventions.

Back in Portland, she tried to interest venture capitalists in commercializing her father's work. Several listened to her pitch, but all had the same message: She was unlikely to land venture funding. Endless meetings with fund managers, however, weren't fruitless. One suggested she seek startup money from the National Institutes of Health's small-business innovation program.

Cathy Epley went out on a limb. With scant knowledge of running a company, she worked 10 months without pay, writing grant proposals and a business plan. She named the business Vesticon, and she and her father held monthly "board meetings" at American Dream Pizza, across Glisan Street from the elder Epley's office.

Soon federal grants started rolling in: more than $348,000 in 2003, $1.4 million in 2004 and $1.6 million in 2005. Cathy Epley hired an engineer and technicians to build a sleeker version of the "Omniax" chair. The company leased an office and set up a crowded laboratory in Southeast Portland.

In January, specialists in Louisiana, San Diego and Portland are set to begin clinical trials of the chair. The study should take four to six months. If it stays on track and yields satisfactory results, the U.S. Food and Drug Administration could allow Vesticon to begin sales next summer. Cathy Epley has already begun negotiating with distributors.

Epilogue

On a recent day in the building where Epley has practiced since 1965, the doctor stood by the controls of his rotating chair.

"We're going to roll you back," he said to a patient from Idaho. She'd suffered intermittent vertigo since a rollover car accident and was back for a follow-up on a successful earlier treatment. Epley piloted the chair through rolls and twists. The device showed signs of modifications: a radio transmitter lashed to its frame with nylon straps, a video camera clamped to an adjacent shelf, cables to added components snaking beneath ceiling tiles pushed ajar.

At 76, Epley sees patients three days a week. He spends the two other days of the workweek at Vesticon. His daughter's startup has already launched development of two of Epley's other inventions.

In a pause between patients, Epley reflected on the reasons other doctors refused to accept his findings for so many years.

"If I look back at medical school, much of it was misinformation," he said. "Physicians learn to just do the routine, to do the accepted things -- don't go too far out.

"They've got so much to lose if they stick their neck out."

 
Old 01-03-2007, 12:08 AM   #3
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Re: Excellent story about Dr Epley - well worth a read

...and here is another story about SCD which I know an number of people on this forum have had surgery for. Another great read...

 
Old 01-03-2007, 12:10 AM   #4
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Re: Excellent story about Dr Epley - well worth a read

This week filmmaker Aviva Ziegler presents a special feature, a story that is stranger than fiction. It's about a rare medical condition called 'Superior Canal Dehiscence' which causes people to hear too much. They hear their blood, their bones, their eyeballs moving and even their pain, as well as every noise echoing in the world around them, from the tiny scratch of insects to every lawn mower in their suburb and conversations dozens of metres away.

But this ability is not a blessing of heightened sensitivity enriching their lives, it's a curse that is increasingly and overwhelmingly making their daily existence intolerable.


Program Transcript

Norman Swan: Hello and welcome to the programme.

Today on The Health Report: something I suspect youíve never come across before Ė people with almost supernatural powers of hearing Ė so sensitive that they can hear the scratch of insects, the blood in their bodies, or a defective bearing in a motor a few doors down the street.

The Health Report today is a documentary called ĎA Very Noisy Headí and itís been made by Aviva Ziegler.



Mattea Sarpa: Eyeballs sound like creaking doors, eyelids opening and closing have a scratchy sound, bones and joints creak.

Michael Halmagyi:We think these people would be ideal earthquake detectors, just like frogs and crocodiles they can hear footfall a long, long way away because their whole body acts as a microphone.

Mattea Sarpa: Even if I have pain, I have actually hurt a shoulder, the pain in my shoulder has the type of noise to it.

Michael Halmagyi: There are some odd symptoms in medicine which if you havenít heard them before you think these canít be real, but these are real.

Aviva Ziegler: If you think that what youíve just heard is science fiction youíre mistaken, it isnít. This is a real story about a woman who suffers from a rare medical condition. But the path to discovering that it was a medical condition and not a sign of madness has been a long and frustrating one for Mattea Sarpa.

Mattea Sarpa: I first noticed something strange was, one night at a presentation and awards night, the microphone did a microphone squeal and the next thing I knew I was being helped off the floor. I had actually fallen off a chair that I was sitting on and then soon after I felt headachy and annoyed for long periods of time and the next time something happened was my husband whistled loudly calling the dogs and that whistle was of a pitch that also made me pass out on the spot. And I realised that there are certain noises that are able to do that to me, so I started to see the local GP and he did say he felt that it was an inner ear infection and proceeded to give me antibiotics which didnít help at all. Then I was referred to a specialist who said I had probably a type of fungal growth in my ear and gave me fluoride tablets which made me terribly sick but didnít help at all.

Aviva Ziegler: It was nearly two years of believing that she was actually going crazy before Mattea was finally referred to a neurologist who was able to help her. At the Hearing and Balance Clinic at Sydneyís Royal Prince Alfred Hospital, Professor Michael Halmagyi recognised her symptoms and told her that what she had was superior canal dehiscence, a rare condition where people become hyper sensitive to sound usually caused by a hole or crack in the protective casing that surrounds the inner ear. Our ears are made up of three parts Ė the first is the outer ear canal that leads to the eardrum and behind that is the middle ear where tiny connecting bones transmit sound to the third part, the inner ear. And thatís where Mattea has her problem.

Michael Halmagyi: The inner ear is encased in a very thick part of the skull bone. Itís the thickest part of the skull bone and in fact one of the thickest bones in the body because itís a very delicate vibrations sensor. But the inner ear has two vibration sensors, it has the hearing part which of course is frequencies between 250 and about 6000 cycles per second and then it also has a very low frequency vibration sensor part which goes from static, which is gravity, to about 20 cycles a second. And this sensorís not so much vibration of the air as vibration of the head. So that is the motion sensor part. So the sound sensor and the motion sensor are in principle very, very similar organs, and in fact they are in the same inner ear organ encased.

But when this casing develops a hole two major things happen and they both relate to the fact that when you remove the case you make this sensor hyper sensitive. One of the benefits of having it in such a thick casing is to reduce its sensitivity. Very crudely speaking itís a bit like how tender does a nail bed feel when you remove the nail? Itís not meant to be without a casing and if you even make a hole in the casing of the inner ear it becomes too sensitive both to sound and to motion. And not only that it tends to convert one into the other, so in particular sounds stimulate the motion sensors because normally thatís dampened out. This is a person in whom loud sounds are really uncomfortably loud and those sounds will cause a sense of imbalance.

Mattea Sarpa: Just say there is a fluorescent light that is flickering, that is almost as bad as hearing a really loud noise because the hearing and the vision is connected and there have been times where a flickering light almost is enough to get me into a state of a fit. And flickering on and off does make a noise and at a high speed. I can hear all the workings of the inside of my body from the heart beat and pulse, the blood passing near my ear, my eyelids opening and closing, my actual eyeballs turning make a noise.

Michael Halmagyi: Not only external sounds appear too loud but these people become aware of their internal sounds and in particular what they find sometimes quite troubling is the persistent sound of their own hearts. The reason for that is double Ė in other words the main artery and vein that supplies and drains blood from the brain goes about 2 millimetres away from the inner ear. And normally we canít hear that because of the bony casing but if that bony casing is damaged you suddenly become aware Ė itís like living next to a train line.

Mattea Sarpa: Walking into an arcade shop where thereís all those arcade games and noises going left right and centre and beeps and pings, I hear that type of noise in day to day life. Some days by the time I come home I feel that I am exhausted, my brain is just exhausted hearing and deciphering because my brain wants to understand all the noise it hears.

When there is more than one, two, three, twenty sounds I can actually hear all of them, it becomes like a cacophony of muddled noise because I can hear whatís happening right next to me and I can hear whatís happening 20 metres away just as loud. And the worst possible types of noises are grinding, vibrating type of mechanical noise. Voice noises is OK but mechanical noises seem to be getting into that pitch that is too loud for my ear, itís almost grinding right into my brain.

Aviva Ziegler: How much more intense is it than the average would you say?

Michael Halmagyi: We have as much as 10 decibels better than a normal hearer. Now 10 decibels at that range would be nearly 20 times as good in terms of energy. In some range, in some of the frequencies, very low frequencies sheíll be 100 times as good as an ordinary hearer. Weíd been aware of people like that for years and years. This phenomenon of balance activation by sound was well described a long time ago and carries actually in medical parlance the name of Tullio.

Aviva Ziegler: But itís just not sound thatís involved, vision is as well because vision is partly controlled by balance. Our ears make our eyes move involuntarily and irresistibly. For example Dr Halmagyi can diagnose balance problems by looking at abnormal eye movements. The direction of these beating, jerking, movements of the eye called nystagmus can actually tell a doctor which part of the inner ear has a problem.

Michael Halmagyi: But the real breakthrough came in 1998 when a doctor in the United States, Dr Lloyd Minor looked at the involuntary eye movements that are produced by sound in this so called Tullio effect and realised that they had to come from one particular canal of the inner ear. And eventually realised that if you do very thin and fine cat scans you will see that that canal is missing its roof. And so what he found is that the bone between the top of the inner ear and the brain was abnormally thin. And really completely defined this condition.

Aviva Zieglaer: When Dr Lloyd Minor the American specialist visited Australia some years ago Mattea went to see him and he became very intrigued by her condition.

Mattea Sarpa: He talked to me and videoed me actually passing out. They reproduced a noise in some headsets, many apologies, but he said that it was invaluable for his research. My hearing starts way before anybody else can normally hear Ė I already hear.

Aviva Ziegler: You could make a good spy.

Mattea Sarpa: Thatís correct, Dr Halmagyi wanted to sell me to the CIA but my kids wouldnít be in it.

Of a night when itís quiet I can hear things in my house from great distances. We live on acreage so I can hear dogs barking miles away. I can hear scrabbling noises throughout my house, if thereís a mouse somewhere I can hear him because itís so quiet and controlled I am able to hear the slightest noise. A door creaking, anything even the fridge running from a bedroom to kitchen, I can still hear it. If I was to walk with high heels on wooden floors yeah, thatís really bad because I actually hear through my body as well. That vibration goes straight through me.

 
Old 01-03-2007, 12:11 AM   #5
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Re: Excellent story about Dr Epley - well worth a read

Michael Halmagyi: Itís like, a bit like you know when the Indians used to put their ears on the rail track to hear the train coming. Well they donít need to put their ears on the rail track they can actually hear those ground vibrations.

Aviva Ziegler: How many people would present with this sort of problem?

Michael Halmagyi: We run a busy dizzy clinic and a hearing clinic, yeah we would see one a month.

Aviva Ziegler: Although Professor Halmagyi knew what Matteaís problem was he still wasnít sure what had caused it. The fortuitous arrival of a new patient from Queensland who was complaining of similar symptoms to Mattea gave the medical team the clue theyíd been looking for. The new woman had been hit on the head with a hockey stick.

Mattea Sarpa: And they found that she had had a blow to the head just behind the ear and this had caused a slight fracture in the skull and was making her have like amplified hearing. So they came back to me and said have you had some sort of accident and itís true, because I did have a blow to the head, to the side of the head in a car accident. And it was soon after that that it started. And because it had been years ago I was not physically ill at the time, the blow to my head was not of as great force or I didnít feel I was suffering from it. It had actually caused a by product.

So thereís like a hairline fracture in a certain position amplifies the hearing because we are able to hear through the ear and through the skull at the same time. I had a special bone x-ray done of the head and there is the fracture just there, in the right spot.

Michael Halmagyi: We think what happens in some people thereís a very thin layer of bone covering the ear and theyíve had that most of their lives and then a wack on the ear or something just finally is the straw that breaks the ear. We know that thereís a big variety in the thickness of this bony roof and it may be that in some people it is already is very thin and over years it gets thinner and then it passes the critical point. We donít think itís entirely something that develops thereís got to be a certain predisposition to it.

Weíve got over 40 patients now who come to us with this. Sometimes they just feel thereís a blockage in the ear, sometimes they become aware that they can sense vibrations or they can hear vibrations. Often the presentation can be subtle. In Matteasí case it was pretty obvious or obvious now.

Mattea Sarpa: With mechanical things I can actually tell when things are not running well, they make odd noises. And in the shopping centre I advise the butcher next door that his fridge was going to break down and they all laughed, and sure enough the next morning there was a mechanic pulling his fridge apart. So the mechanical noises are the ones that really stand out a lot.

Aviva Ziegler: Is there any sort of music that you can listen to?

Mattea Sarpa: Music in general is good unless itís got the real clashy sounds in it because itís certain pitches of music and voice and mechanical noises that when it gets to that level it wonít matter what type of noise, whether itís singing or mechanical, my eyes vibrate and I know itís going to happen so I can try and avoid it.

I went to see Andrea Bocelli live, that made absolutely no impact on me but what did make an impact was when everyone ped, oh 10,000 people ping was not very comfortable.

Michael Halmagyi: Obviously the ear is frequency tuned and there is a particular frequency around 500 cycles a second that is the most potent at activating the balance system. We had one person who noticed that when he sang a certain note his vision would tilt. So if he looked at the horizon, if he made this sound, the horizon would move. Pressure or the sound would activate the balance system in one ear, the static balance system, so every time he made this sound his eyes would turn and therefore he had the illusion that the world had tilted.

Another patient who was a fire chief and the combination of ladders and sirens is not a good one for him. Going up a fire ladder and the sirens going he really thought heíd fall off.

Mattea Sarpa: Recently I was in a shopping centre and I turned to my husband and I said to him the fire alarm is about to go off. And he said oh, donít be like that, he said I couldnít handle you being silly today. Sure enough within seconds the alarm went off and the whole centre was evacuated.

Aviva Ziegler: In the five years since Mattea was first diagnosed her sensitivity has worsened and sheís found working in her family business increasingly difficult.

Mattea Sarpa: We owned a fruit market, a large fruit market, in a shopping centre so the amounts and varied types of noises from cash registers to scanners to trolleys, crowds of people and of course the worst of all was the fire alarm, I would get dragged out of the shopping centre by someone because Iíd just dropped.

By the time I came home I was not good, unable to function. I had constant headaches and I needed to be in a dark quiet place to recover from a day at the shop. And so that was not making my life very good and my family life was suffering terribly and in the end it was not worth me being in business. And so we decided to sell and now Iím home and I do feel a lot better because I can control the surroundings that Iím in.

Aviva Ziegler: Have you got any way of cutting yourself off from any of it?

Mattea Sarpa: I do wear ear plugs especially if I have a function where thereís a large gathering, weddings and parties. I wear ear plugs, so everything is very muffled. I tend not to speak much, Iím a bit of a wallflower, Iím there but Iím not there. I went to see a show in the city, ďWe Will Rock YouĒ. Yes, that was not good. Even with earplugs in the theatre, I had moments of near passing out.

Aviva Ziegler: Finding an earplug solution that gives the right balance between cutting out some but not all sounds has been challenging for the medical team. Their most recent experiment has been with a commercially available hearing impeder.

Michael Halmagyi: Thereís a special type of hearing protector which is marketed for hunters and these hearing protectors will transmit sounds perfectly well up to about 80 decibels. Itís fairly loud but above 80 or you can set it to higher, they would totally cut off and protect the ear. And we are trying that with Mattea because her problem is in a way similar that soft sounds are OK but once you get above 80 or certainly 90 db they become not only just unpleasantly loud, they can make her off balance.

Aviva Ziegler: Christopher Whitfeld is the audiologist whoís been working with Mattea and regularly monitors her progress with the hearing aids.

Christopher Whitfeld: Hello, I havenít seen you for a few weeks. Iíll look up the last session with you.

Mattea Sarpa: You fine tuned the aid a bit.

Christopher Whitfeld: Have you been using it most days?

Mattea Sarpa: I have used it up until the end of December, I used it very frequently but we have made some big changes to our lifestyle and weíve sold our business and Iím at home now out on a property thatís away from traffic and any type of noise and I very rarely use the earpiece except if I go out.

Christopher Whitfeld: What about in places like in the kitchen or somewhere where there could be loud sounds that you donít expect sometimes like plates and cups. Are those things loud enough to upset you?

Mattea Sarpa: They are loud enough to upset me but I think Iím learning to live with those occasional sounds rather than the constant ones. It was the ones that were constantly around me that upset me more.

Christopher Whitfeld: The hearing aid will work as well as putting a plug in there.

Mattea Sarpa: It does.

Christopher Whitfeld: But it just keeps the ear open to all the softer sounds.

Mattea Sarpa: At home Iíd prefer to have some actual music on loud enough to cut out any other annoying sounds but not too loud that it upsets me.

Christopher Whitfeld: You havenít got it with you today?

Mattea Sarpa: No.

Christopher Whitfeld: OK.

Mattea Sarpa: It is all still working well.

Christopher Whitfeld: Itís really doing what an earplug would do but without blocking up your ear for softer sounds.

Mattea Sarpa: Now my own family since weíve sort of discovered what it is seem to be not just sympathetic but they seem to have a better understanding that until recently I didnít even know what was wrong and it was difficult to try and reason why I was feeling like this.

Christopher Whitfeld: Well some of the symptoms that you get having your balance organ stimulated by loud sounds are similar to those that you could get from anxiety.

Mattea Sarpa: I think that I was actually probably getting anxiety as a by product.

Christopher Whitfeld: Oh yeah, you would.

Mattea Sarpa: Of the way I was feeling.

Christopher Whitfeld: Once youíve learned that those situations are going to make you feel nauseous then every time you know youíre going to be exposed to loud sounds you donít want to go. Iím happy Mattea, just keep going on the way you are and let us know if you need anything.

 
Old 01-03-2007, 12:12 AM   #6
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adamw HB User
Re: Excellent story about Dr Epley - well worth a read

Aviva Ziegler: Apart from the hearing aids there is another solution on offer for Mattea. Itís a new operation to repair her fracture. But so far only a few dozen have been performed in Australia and although mostly successful, only three of Dr Halmagyiís patients have so far taken the plunge. It was the American expert, Dr Lloyd Minor who realised that sound amplification could be stopped if the damaged casing was given a new surface.

Michael Halmagyi: Not only was the condition defined by Dr Minor they actually devised the operation to fix it which is basically resurfacing the casing, itís like putting new tiles on your bathroom floor. The only thing is the bathroom floor is the floor of your skull on which your brain rests so weíve got to open your skull, pull your brain aside and put a new surface on top of your ear.

Often people who have this have a number of tiles that have lifted so it is not just one hole in the canal itís a person has a very thin floor, very thin floor. We call it the roof of the ear but the roof of the ear is the floor of the brain and youíre coming in from the first storey and trying to repair what is in fact the floor but what the personís complaining of is a hole in the roof or the ceiling. But youíll see there are a number of holes and so the trick is to identify exactly that hole and the scans with the stereo tactical localisations now are good enough to do that.

Aviva Ziegler: In terms of the prognosis for her what would you say that was?

Michael Halmagyi: I believe the thing could be fixed by an operation but you know quite rightly sheís quite sensibly tossing up the material risk of the surgery versus the unpleasant inconvenience of the condition. But the surgery has a material risk, in any sort of surgery thereís a certain death rate. This canal is the top canal of the inner ear so it is actually right under the brain. We donít actually open the brain, we donít even open the sack in which the brain is contained called the dura, we just pull it aside. But thereís always a risk, itís a small risk but an irreducible risk.

But you know, it is a new operation and therefore you know you learn as you go and quite rightly you know sheís waiting to see whether there are better ways. We think there may be an indirect endoscopic way of doing it but the problem with this canal is that you need to go through the skull to get at it at the moment.

Mattea Sarpa: The fact that they would have to move the brain aside to reline the inside of the skull is very delicate, so I feel at this point itís not life threatening to me to be like this, I just have to learn to live with it.

Aviva Ziegler: Not a good thing to have to learn to live with though.

Mattea Sarpa: We have a very noisy environment and people donít realise how noisy our environment is with all the mechanicals and all the equipment and televisions and fridges and blinking lights and things. But it does make life difficult in certain ways that other people wouldnít even dream of.

Aviva Ziegler: So if you want to relax, what do you do?

Mattea Sarpa: I put earplugs in so that sounds are reduced to a muffle. Again if I have background music on it tends to cut the sharpness off any other type of noise. The times of day that I can relax are very late at night or very early in the morning. Iím up at 5.30 to have a cup of tea or a cup of coffee in absolute silence. Thatís when I can relax.

Aviva Ziegler: And is it absolute silence?

Mattea Sarpa: I donít think it ever will be. Even if I wore a helmet to block off every noise Iíd still hear my heart beating or my eye balls turning.

Aviva Ziegler: Whatís the worst case youíve ever seen?

Michael Halmagyi: I think Mattea is the worst, not only that sheís an extremely intelligent and erudite person who can tell you about it. And so we have a very clear idea second only to her, we know exactly what she must feel. One of the joys of this job is when you have someone like that who teaches you a lot, I mean we learnt from her what to ask for. Sheís been very helpful in the advance of this field.

Mattea Sarpa: The problem is there are very, very few people out there that are aware of this and thatís made me feel bad because people donít understand and they think that Iím silly or you know, slightly crazy. Whereas before it was just me thinking that I was abnormal. I would like to help other people realise what an ordinary life must be like for people who hear too much.

Aviva Ziegler: Well some people would say itís a wonderful thing to hear but to a degree.

Mattea Sarpa: When you hear everything Ė there are just some things you donít need to hear, donít want to hear.

Aviva Ziegler: Do you have any favourite sounds?

Mattea Sarpa: Dr Halmagyi put me in a soundproof room and that was the best sound Iíd heard in a long time. But he had to switch the light off cause the light was making a noise and that caused him to be very excited that I could hear the light. So we had the light switched off and I sat in quiet, in absolute silence and it was the best noise I had never heard.



Norman Swan: That amazing documentary was made by Aviva Ziegler and the sound engineer was Mark Don. Our thanks to Professor Michael Halmagyi for his assistance.

Guests on this program:

Professor Michael Halmagyi
Hearing and Balance Clinic
Royal Prince Alfred Hospital
Sydney

Chris Whitfeld
Audiologist
Sydney

Mattea Sarpa
Patient
Sydney


Presenter: Norman Swan
Producer: Brigitte Seega

 
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