Tuesday, December 13, 2011

Surgery #23

(first off, thanks for giving me the links to your blogs. I'm going to get them in my reader and start reading!)

It may not be #23 if some other wacky thing happens to me before then, but I know this surgery is in the future for me.

Long story much shorter in easy to read bullets ...

~ A few months ago, I suddenly got this feeling in my right ear. It felt like it was a bug. Horrible. Doc checked, no bug, ear infection, antibiotics.

~ 2 weeks later, still feels like a bug. Having a few dizzy spells. Hearing almost underwater type sounds. Back to doc. Nothing. Referred to ENT.

~ 2 weeks later, see ENT. Nothing. Even under microscope. Hearing tests show an uncommon type of hearing loss, low-frequency conductive hearing loss. Both audiologist and ENT were a bit suprised. If condition continues, refer to the next level of doctors, the neuro-otolaryngologist.

~ The feeling in ear is happening 25+ times a day.

~ See Neuro-otolaryngologist. First thing he wants hearing test redone, not believing the one ENT sent him. Tested. Same. He then performs all sorts of tests. Seems when a vibration is put on my head behind my ear, my eyes do the wrong movement. Same thing when my ear is pressurized. Sent to get a CT scan.

~ Back to Neuro-otolaryngologist after CT performed. CT confirms I have a "very rare" condition called "superior canal dehiscence syndrome". (bone at top of ear is partially missing, literally wron down by the brain.) Awesome.

~ Fixing would take surgery following these steps:
1. cut a piece out of my skull behind ear
2. break an ear bone. (The pinna? I forget)
3. lift up MY BRAIN.
4. replace missing piece of bone.
5. situate my brain once again.
6. fix the bone they had to break.
7. plug up the whole in my skull.

~ I know it's not technically "brain surgery", but the fact they have to touch it at all freaks me out. Since my symptoms aren't too bad right now, we are giong to skip the surgery. But he said my symptoms will most likely just get worse and when dizziness and/or hearing problems start affecting my quality of life, we'll do the surgery then. Next appt to check symptoms is in Feb.

heh. brain surgery. not too surprising, is it?


Julie said...

Oh No! That's horrible. I hope the surgery goes smoothly when they eventually have to do it.

Shannon said...

Oh yuck - that would really freak me out too. I'm hoping it's not quite as bad as I'm picturing it in my head. With everything you've been through I'm sure you'll be just fine. :)

MNRN said...

I swear I just heard something about this condition on good morning America or the today show or something. Interesting. I hope you feel better soon!

Lisa said...

Wow! That is really scary! It is close enough to brain surgery, you have more than a right to be freaked out. Here's to hoping the surgery does not have to happen any time soon. Take care of yourself!

jenn said...

Holy shit! I'm freaked having wisdom teeth out! I can't imagine... only you Nancy!

Sarah said...

Wow, crazy. I hope it goes okay. That ear thing sounds really annoying to be happening that many times a day, so I guess I'd do whatever necessary to make it go away!

Nicole said...

Have been reading for awhile, not sure I've commented much in the past. Ugh you know the only good point of this story? That the doctor actually figured out what was wrong. Would've sucked if you went back and forth to all of these doctors and no one came up with anything and thought you were crazy. Been there, done that and lots of money spent.

LadyMistery said...

I have the same thing. But mine's on both sides. It took them over 4 years to diagnose me.

The first doctor I talked to told me to lose weight and I'd be better. I started looking for a new doctor that day.

It's close enough to brain surgery that it makes no nevermind.

I'm not having surgery yet either, because I can still walk - for the most part.

Please, email me - I would like to talk with someone who hasn't had surgery yet.