superior canal dehiscence
Todd in profile as seen by the CT scan
Today I took the day off work for a couple reasons. First, my parents needed someone to take them to the airport at an ungodly hour. I got up at 4:26 AM in order to drop them off at 5:45 AM, so they could catch a plane for Africa.
So I decided that since I was going to be in the vicinity, I might as well schedule my head CT for this morning and just do that on the way back from the airport. So at 7:00 AM I had the head CT, and then at 8:45 AM, I had an appointment with my ear doctor to look over the results.
Long story short: He confirmed that I have superior canal dehiscence on the right side, just as we suspected from the MRI results last week and from my history. I may have it on the left side, too, but the right side is the one that’s bothering me.
This is good – but frightening – news. The good news is that after 13 years, 3 doctors (not counting my primary care physician), a couple of misdiagnoses, and some acupunture that didn’t do squat, I finally have a clear diagnosis with physical proof! Woo hoo! And they can even probably fix this. The scary part is that in order to repair the dehiscence, I’ll have brain surgery. And of course there is no guarantee that it’ll fix the problems, and it may cause other problems. But if you’d lived with this problem for over a decade, I think you would agree it’s worth the risk.
Below is the image that (according to the doctors) is the smoking gun. If you knew what to look for you could see that the top part of the superior canal has dehisced, or opened up, into the brain cavity.
Beth said,
September 19, 2008 @ 5:46 pm
You look so handsome in profile.
Ears and Fears | Living the Mile-High Life said,
September 26, 2008 @ 7:30 am
[...] Rita, who’s managed to keep going, even get a book deal. And to Todd, who may have found a cure after 13 years of [...]
Patricia said,
October 6, 2008 @ 7:55 pm
Hi Todd-
I was diagnosed in 2004 and had the surgery. If you have questions let me know. Do you plan to have he surgery? The success rate is very good these days. Make sure you get the most experienced surgeon you can w/this particular surgery not just Acoustic Neuroma surgery, not the same.
Robert E. Yorke said,
October 14, 2008 @ 8:00 pm
Todd:
I’ve been diagnosed with Patulous Eustachian Tube (PET) dysfunction, but there may be the possibility of superior canal dehiscence (in my opinion)….when are you going to have the surgery and where? As well, who is the surgeon? I live in Riverside, CA
Todd Bradley said,
October 15, 2008 @ 2:14 pm
To answer Patricia and Robert’s questions…
Yes, I plan to have surgery, though I don’t know which one yet. I had a second opinion on Monday of this week and the second surgeon agreed with the first surgeon.
At the moment, I’m planning to have surgery in February at the University of Colorado Medical Center in Denver (Aurora, actually). That way, I won’t be trying to recover during the holidays. Plus, the second surgeon I saw suggested not rushing into things and waiting a few months just in case the problem goes away (which is highly unlikely, but there’s no harm in waiting unless my symptoms get worse).
Peter said,
October 16, 2008 @ 7:53 pm
Todd,
What are your symptoms? I have recently had a CT scan that shows a ‘pinprick’ dehiscence in my left ear.
My symptoms have been chronic low grade dizziness, brain fog, fatigue and low grade nausea. They say mine doesn’t warrant surgery, but I would love to get rid of these symptoms.
Are they recommending plugging the canal or trying to resurface the canal?
Thanks
Todd Bradley said,
October 16, 2008 @ 8:57 pm
My primary symptom is autophony, as I describe more detail here:
http://www.toddbradley.com/?p=753
But I do have occasional dizziness and fatigue.
I haven’t talked to my doctor yet on the finer details of how he plans to repair the problem, so I can’t answer the question about plugging or resurfacing.
Todd Bradley’s Galaxy » Tullio phenomenon and Empty sella said,
November 23, 2008 @ 4:04 pm
[...] my heartbeat. The medical term for this is pathologic nystagmus. It’s a common symptom of superior canal dehiscence. But, although I suspected I had some mild symptoms like this, I didn’t know for sure until [...]
Amy said,
January 20, 2009 @ 6:22 pm
Hi Todd,
I stumbled across your site while looking for info on SCDS. I find it interesting that you said your main symptom was autophony. I’ve had intermittent autophony for 4 years although it has become worse over the last few months – almost always triggered by exercise which has lead me to believe I have PET.
However every now and then I get vertigo which no one has really had an answer to, except for a theory that it was caused by anxiety. Then there’s the running joke that everyone has always had about my balance problems (I always walk into things/fall over). I’ve never connected dizziness/vertigo to sound before though (although have never even considered it so I suppose I wouldn’t have noticed).
Is this at all similar to the symptoms you had? As I read, you thought you had PET at first too. Also I’m wondering if you experienced a “crackling” or “popping” sound in your ear when you swallowed (as this is something that has become constant for me recently).
Sorry for all the questions – I was scared off doctors a few years ago when they all kept telling me there was nothing wrong and I just want to be armed with as much information as possible for when I get up the nerve to try again.
Cheers