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.
You look so handsome in profile.
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.
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
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).
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
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.
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
I know, this thread is super old. But I’m looking for doctors in the south or east side of Denver who treat this. Do you mind sharing what doctors you went to for surgery?
Dr. Gerard Gianoli of Baton Rouge, Louisiana did my surgery. He’s great and I highly recommend him. Even though I said in this article that I was planning to get it done at the University of Colorado Hospital, I changed my mind after doing some more research. You can read all about that on the web forum at SCDSsupport.org. I highly recommend the site. It has a ton of information about SCDS/SSCD, including articles about the various surgical approaches, doctors, recovery, etc.
Awesome, thank you so much. I hope you’re doing well.
I have had two surgeries for SCDS at the University of Utah in Salt Lake City. Their ENTs are well versed in the problem!
I have had two surgeries for SCDS. It has been about 4 years since my last surgery. I am suffering from extreme migraines and tons of pressure in my ear that they plugged. I still experience brain fog at times. Does anyone have any suggestions?
I have elevated intracranial pressure, too, and it seems like it’s been worse the past month or so. Janet, if you haven’t already done so, you should join SCDSsupport.org. You’ll find a lot more people who suffer from SCDS related issues are there than who read my blog.
Hi…. I posted on a very old post but did you also have PLF surgery with Dr. Gianoli? What were your symptoms related to that?
Hi, Sara. I didn’t have PLF surgery, though since the study of SCDS/SSCD is so new, there wasn’t a CPT code specific to SCDS surgery. So my surgery was coded as a PLF surgery.
I don’t know if there is a web forum for sufferers of PLF specifically, but a lot of the people who are members of SCDSsupport.org also have PLF. I highly recommend the site for any patient who wants to share information on surgery techniques, recovery, doctors, side-effects, etc.
Did your autophony get better after surgery? That’s my primary symptom too.
It turns out this was only the first of three surgeries that I would have. The whole story is too long to get into here. You can read the details on scdssupport.org if you care. But the short answer is “overall, yes, it did get better”.