menieresmommy











{November 4, 2011}   “I Can See Your Halo.”

I am counting the days until I get to see my ENT.

I am so excited to find out what is “really” going on.

Get the “magic” medication and put this nightmare behind me.

I walk in to the waiting room, check in and patiently wait for my name to be called.

Here I go.

The MA takes my weight 106

Blood pressure normal

“So your still having vertigo attacks?”

“yeah” just get me in that room NOW………

“The Dr. will be right in.”

Okay sighhhhhh

I see a flash of white light from the halo hanging over Dr. Wong’s head. (or are those horns?)

“Hello, what’s been going on?” 

I proceed to recap the last few weeks of my life.

I don’t leave out one miserable detail.

She is typing on her computer as I speak.

My eyes well with tears.

“It sounds like you have what’s called 

Superior Semi-Circular Canal Dehiscence Syndrome”

http://www.californiaearinstitute.com/ear-disorders-semi-circular-california-ear-institute.php

YES!!!!! Sound the bells, blow the whistles. We have a diagnosis friends.”

Dr. Wong then proceeds to show me a 3D model of the inner working of the ear.

WHAT IS SUPERIOR SEMI-CIRCULAR CANAL DEHISCENCE?

Superior Semi-circular Canal Dehiscence Syndrome (SSCD) is a very rare medical condition where a thinning or complete absence of a portion of the temporal bone overlying the superior semicircular canal of the inner ear causes hypersensitivity to sound and balance disorders. One unique characteristic of SSCD is that audiologically, the hearing loss appears to be conductive, though it is actually sensorineural. Computed Tomographic scanning (CT) and Magnetic Resonance Imaging (MRI) may be used to diagnose SSCD, and distinguish it from more common diseases with similar symptoms such as Meniere’s disease.

“This can be completely fixed with a small patch during surgery.”

Yes!!!!

WHAT ARE THE SYMPTOMS OF SUPERIOR SEMI-CIRCULAR CANAL DEHISCENCE SYNDROME?

Symptoms of SSCD include dizziness and balance problems which increases with activity and which is relieved by rest. A cardinal symptom of this disorder is vertigo produced with a loud sound. Other symptoms may include hearing loss, tinnitus and a fullness of the ear. The symptoms of SSCD can get worse with extended episodes of coughing, sneezing, or blowing of the nose. Sometimes the use of ones own voice or a musical instrument can also aggravate SSCD.

Yes!!!!!!!

“You need to have a CT scan in order to be sure and to be able to see exactly where the Dehiscence is located.”

“Okay, let’s do this sister.”

“We will have the nurse schedule the CT scan and I will speak to you when I get the radiology report.”

Excellent.

“Thanks Dr.”

“Your CT scan is scheduled for 2 weeks from now.”

YES!!!!

Finally, I know.

I have a name.

Finally, I see light at the end of this dark, lonely tunnel.

I am not excited about getting a CT scan.

Especially one of my brain area.

CT scans produce a HUGE amount of radiation.

Now I worry that I will get a brain tumor from the CT scan.

I Google.

I wish I didn’t do that.

Why do I do I do that?

I have no choice.

I can’t live this way.

Happy Spinning.

xoa

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wendy says:

I love the way you write.
I hope they are right and can fix this for you.
I have bilateral Meniere’s.
looking forward to finding out if they can help.

find out something new every day.

good luck.
wendy



Christie says:

…Hi. I was searching for vertigo and meniere’s sufferers…. and came across your blog. I have vertigo, and have been told in the ER that I need to go to an ENT because it could possibly be meniere’s disease. All I know is that about 2 years ago, I was fine and okay, or so I thought….. and then this has came along. I have spells of vertigo a few times a week, but I have a feeling of being off balance every day of my life, all day…… and I hate that. I take mecilizine like it’s candy…. and sometimes it helps, sometimes it doesn’t. I am trying to get medical assistance so I can go to an ENT and get some help. Right now that is at a stand still…. and I need some support…… so I’m glad I found your site.



wendy says:

Christie,
Hope you don’t mind me butting in.

You could have any number of things. It does sound like you have a vestibular disorder.
Meniere’s usually starts out slow, but for some it’s fast.
There are a few symptoms that are classic of Meniere’s if you don’t have them all, it’s probably something else.
(some doctors say you can have it with just some of the symptoms, my vestibular specialist at Duke, says if you don’t have them all, it’s something else.)

The symptoms are sudden spells of rotational vertigo, lasting anywhere from minutes to 20+ hours; fluctuating Tinnitus (often getting worse before an attack…but mine is just crazy all the time.), Aural fullness (you feel like your ears are full of something, this often gets worse right before an attack), and fluctuating hearing loss, (again, often right before an attack).

I admit mine started slow, and I didn’t notice the drop in hearing before an attack for a while, until someone told me to look for it. as I progressed, that became much more apparent.

I’m one of the very rare Meniere’s patients, I am bilateral….most have it in one ear…and I’m advanced, I have to have hearing aids, and will probably need a cochlear implant at some point.

There are treatments. Don’t give up.

But you could have a different vestibular disorder that can be fixed.

I have one big recommendation. When you go to see an ENT…before you go, research them. Make sure they know a lot about vestibular issues. I saw one with a great reputation, but after 7 years of seeing him, when things got to where I was disabled, he finally told me….”I really don’t know that much about Meniere’s”

I too have a blog…http:/picnicwithants.wordpress.com, I’d be happy to talk to you more about all of this. Feel free to email me. apicnicwithants (at) gmail (dot) com

I can tell you about other medication that are better for vertigo if you can get them prescribed. I used to take Meclizine like candy too…it didn’t work very often for me either.

good luck!
wendy



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