I was going to wait until the surgery was scheduled

[chanel19]

But I accidentally unlocked the last post, so here's what's going on. I was trying to spare the vast majority of you from all my whining while I was going through this latest round of testing. I was diagnosed with a superior semicircular canal dehiscence, which is a hole in my skull between my brain and my inner ear. The good news is this could be

Comments

[girlunravelled]

ok, a little scary.

(I've actually heard of the condition. i'm a nerd).

{{gentle hugs}}

[chanel19]

Wow. You are a nerd. My neurologist hasn't even heard of this condition. My neurotologist on the other hand was practically giddy when he discovered I had it. He's the one presenting the paper. I don't like it when doctors are that excited to see me.

[girlunravelled]

well, i should admit that i did not see it in a neurology text book (yes, i used to study in the med library, but only b/c it was quieter than the undergrad library), but on one of those TLC medical "this is a mystery and 7 doctors missed it!" show. some guy had a thinning of that part of the bone that was then exacerbated by a change in pressure while on a plane ride.

[chanel19]

Thanks, me too.

[moeyknight]

I watched a show called Mystery Diagnosis on Discovery Health a few weeks back and right after that I was talking to B and she mentioned they had figured out what was wrong with you. I don't know if that guy had the exact same diagnosis, but I know he had a thinning of the skull by his ear canal. It was a weird coincidence. Anyway, to make you feel better about something that no doubt has you up at night, the guy on the show had surgery to repair it and is now living a full happy life.

[chanel19]

Was he a French horn player from the Berlin symphony? If so, he's on our forum. HIs name is Adrian and he's very nice.

[moeyknight]

No, that wasn't him. I looked up the episode though and apparently it's one of their most popular mystery diagnoses.

I can't imagine being in a symphony with your condition. Isn't everything like loud times a billion?

[chanel19]

What was the name of the episode? They are available on iTunes and I'd like to see it. As for Adrian, he was first chair for the Berlin Symphony and had to leave his job. After he recovered from surgery he went back to work and is once again first chair. I looked it up. Adrian's story was on 20/20 Medical Mysteries. It's available on YouTube if you look up The Musician Who Heard Too Much.

[suehypno]

That's just so bizarre! Leave it to you to be famous for this, huh? Is this something that you just developed, or is it something you maybe had all the time?

Any mention of whether or not meanness played a part? ;^)

I'm sure that despite what's coming up, it has to be a relief to finally know, and that it can be fixed. Let me know if there's anything I can do, huh?

[chanel19]

I was probably born with the holes, but any number of things could have activated the condition, like for instance my last concussion or a really big sneeze. Who knows. I'm bilateral, meaning I have holes on both sides, but only the right side is symptomatic. Right now the theory seems to be that .5% of the population has the holes. Of that .5% only 1 in 20 ever develop symptoms, so it's a pretty small pool I'm swimming in. At least they can diagnose it now. Prior to 1998 CT scans couldn't see it. MRIs still can't. So there are a lot of people on the forum who have been misdiagnosed and have even had the wrong surgeries, so I'm lucky in a lot of ways.

[ivylore]

I'm so glad they finally know what's wrong and that it can be treated. I think of you every time I see Mystery Diagnosis - "when will Marie be on this?"

[chanel19]

LOL. That's kind of hilarious.