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Subscribe to RSSOver a two-year period, Toby Spencer traipsed from doctor to doctor describing his weird collection of symptoms -- all of them involving his left ear.
"One of the first, and probably most disturbing symptoms I had was hearing my left eye movements in my head," says Spencer. "In a quiet room it was so distracting that I would often resort to running a fan or some other white noise to attempt to mask it.
"My voice and breathing were also very magnified in that ear," he explains.
Courtesy of Toby Spencer
Toby Spencer, who's 41 and lives in Skowhegan, Maine, had a strange condition that caused him to, among other things, hear his own eyeball move.
There were other strange signs: "If I turned my head too quickly, especially to the left, I felt like I was falling sideways," Spencer recalls. "Loud noises would also make me feel like I was losing my balance."
The doctors he saw offered various explanations for his hearing and balance problems: From tumors and aneurysms to a jaw disorder or a lack of equilibrium in his blood pressure.
But it wasn't until Spencer, a 41-year-old IT professional from Skowhegan, Maine, stumbled upon an online forum in which a person was describing almost his exact same symptoms that he learned about a rare condition known as superior canal dehiscence syndrome.
Dehiscence (pronounced dee-hiss-ence) is a fancy word for an opening or a hole. As he eventually learned from specialists in this disorder, Spencer's symptoms were caused by a small hole -- often not much larger than a pinhead -- in the bone covering the superior semicircular canal in the inner ear.
Discovered in 1998 by Dr. Lloyd Minor, a physician from Johns Hopkins, superior canal dehiscence syndrome (SCDS) can cause hearing difficulties, balance issues, or both.
One of the more unusual and bizarre complaints described by those with SCDS is hearing their eyeballs moving in their sockets, which supposedly sounds like sandpaper rubbing on wood. (Last week, the BBC ran an article about a British man with SCDS, who like Spencer, also described feeling his eyeballs moving.)
"What makes this condition very interesting and its symptoms sometimes difficult to believe is how a tiny hole [in an inner ear bone] can cause so many problems," says Dr. Daniel Lee, an ear and skull base surgeon at the Massachusetts Eye and Ear Infirmary in Boston, who specializes in SCDS and treated Spencer for it.
The tiny hole is caused by a thinning of the bones of the head and people are likely born this way, suggests Lee. This opening causes balance canals in the inner ear to be abnormally activated, and they respond to loud sounds and to pressure in the ear.
Besides the peculiar symptom of hearing your own eye movements, Lee says his patients also report hearing other noises unusually loud through the affected ear or ears. This may include the crunching sound of their own footsteps, their heart beating, the echo of their own speaking voice, or disturbingly loud reverberations when brushing their hair or shaving.
Sufferers may complain of dizziness or their eyes bouncing up and down from a loud noise, or feeling as if their ear is blocked.
Surgery is not needed simply because there is a teeny hole in the inner ear and the majority of patients do nothing at all after they are diagnosed, explains Lee.
But in April, Spencer had an operation -- a middle fossa craniotomy to plug the hole -- because he felt his symptoms were degrading his quality of life.
"My biggest nightmare was going two years without knowing what was wrong with me," admits Spencer. Now that his symptoms are gone, he "feels great, has more energy, and can enjoy things more."
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Leave a Comment:
That must have been so creepy, just so, so creepy. Glad he got it fixed!
ug
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ABC's 20/20 did a segment on this a few years ago, about a musician who lived for years with the same condition. After a google search he eventually found Dr. Lloyd Minor, who performed the surgery restoring his normal hearing.
The Musician who Heard Too Much
Lloyd B. Minor
WOW. Did Doc Minor do Major surgery?? See what I did there?
I'm not crazy. But I think some of the voices in my head may be.
Interesting.
I've been constantly told most of my life that I speak too soft or not loud enough. And that may be true. Truth is, when I do talk, I can hear my own voice at such a high volume that I always think that I speak rather loudly --- until someone says they can't hear me.
jltox, I have the same thing
Huh? Did you say something?
I've got a hole in my head. But I only have it so I can dump more rocks in there.
Jason! The issue is not with adding more rocks, but more importantly...... loosing them! LOL!!! :) Cheers!!
I have a problem with hearing my heart beating and it is very annoying, but it probably saved my life. Icould hear it skipping beats and recently found out I had a leaky valve plus other problems and have been getting treatment including a stent, but I can still hear the beating.
YES! THIS is why I read the news! I have many of these same symptoms, and it's been driving me nuts for 7-8 years. It started in my 30's. The "eyeballs boucing due to loud noises" symptom is the worst and the weirdest. And hearing my heart beating in my left ear, especially when trying to fall asleep, is anxiety provoking. I am soooo thankful I saw this news article. Thank you Cari Nierenberg! Cari may email me if she pleases. In fact, I would appreciate it if she would.
Time to make some phone calls...
get the surgery, oldest daughter had this syndrome, was driving her crazy, now, post op, she is becoming whom i remember from years ago, much more happy again
Greg
Please join the SCDS support forum at scdssupport.org.
I know it's not the end-all or be-all of medical reference, but Grey's Anatomy had an episode about this. The character who had it was a young girl played by Selena Gomez. They diagnosed it through the bouncy eyes symptom. I thought it was very interesting at the time.
It was actually Demi Lovato... You know before she actually admitted that she was really having some mental issues...
I hope his doctor is paid handsomely for his dedication to accurately diagnosing his patients.
Now if only his eye could see his ear move without looking in a mirror.
lmfao i can can hear you looking at me i mean me me i can hear my self looking at you. and did any one happen to see the pug in the pic of the right hand side and stop at his pic and laugh at how it looks alike
I think those are before and after pictures after he got his ear fixed.lmfao!
I have recieved radio signals from aliens with my head hole. They want me to take them to my leader of my beer and bowl team, not Obama i said. Wow !
It was actually Demi Lovato... You know before she actually admitted that she was really having some mental issues...
Unbelieveable - just this week I went through two days of tests because of these exact symptoms! I don't get my official results until next week but this has got to be it. I started hearing my left eye move two years ago, the ear always feels plugged up, and loud noises rattle my vision in my left eye.
Good to know it's not a brain tumor. :)
Their is only one test that will comfirm or deny your condition, and that is a CAT scan (or somthing similar with that big magnetic doughnut). It takes less than five minutes.
Thanks...I've done all the tests but the imaging. I'm scheduled to get the results next week and will take this article to the appointment. The idea that there's a fix for this is a HUGE relief.
What a bizarre condition.. I can just imagine the looks people must have gotten, before this condition was discovered.
What that you say?, you can hear your eyeballs moving? Okay then...
What an odd thing. I'm glad he got it fixed! I can definitely say that would feel and sound very peculiar.
The hearing of the eyball movement is only a minor symptom of SCDS. I have been affected since 1989 after a car accident which "woke up" the more major symptoms. Before my accident, my symptoms were a constant ringing in the ears, the soft voice, and alot of earaches. After the accident I was plagued by severe spells of dizziness, so intense that they would literly wipe me out for the remainder of the day, including spells in my sleep. A tremendous drop of blood pressure during the spells, so low that the EMT's could not find a blood pressure at all. The twitchy eye, during speech, even what they call "muscle spasms" of the eye muscles, causing painful double vision. The frequent off balance feeling, and the frequent sharp pains in the left temple. And one always overlooked symptom of SCDS is the inability to handle high heat and humidty, like what we have here in southern MN, wipes me out so bad that I can't do anything outside. During the summer I become a prisoner in my own home. But due to other medical problems, surgery is not an option for me. The feeling or sound of most of your joints grinding and muscle movement is due to the abscence of the bone. When the doctors put that "tuning fork" on my leg bones it caused an extreme pain in the left side of my head due to the absence of the bone. To those that dont experiance these symptoms I applaud you, but to those that make fun of this I pity your ignorance.
Feeling the stiffness, eh comrades???
get the surgery - my oldest daughter Katy had this - the surgery will restore your quality of life
I thought those symptoms were normal for everyone. Or, since I was born with micro-atresia, that it was due to being born with one ear. So, I asked my mom if she had the same issues a few years back and she said that she did. But, she has two ears and two eardrums. Sometimes, I wonder if my right eye has dislocated because of the noise. Now, it all makes sense. This is a very interesting article. It answers a lot of questions for me. Maybe it's a combination of the the two diagnosis. I think I will talk to my ENT about it.
Weird !!!!
I have this condition and was very fortunate to be diagnosed and have the surgery. I'm now free of the SCDS symptoms, and have my life back as a result. I'm happy to see this is getting more news coverage so more people are aware of it. It's a very bizarre disorder and hard to explain to friends and family! If you think you might be suffering from this, I'd urge you to find a neurotologist (a specialist who is a neurologist/otologist) and get the proper CT scan to diagnose it. Many ENTs haven't heard of it.
Am I supposed to believe everything I read??
ewwwwww
I have are disorder I have an eye on the head of my penis and it is always looking for trouble, here's looking at you kid.
You do have a disorder. It is called "inappropriate jerk." Hard to fix - needs a lot of years of growing up.