menieresmommy











{December 19, 2011}   “What’s Up Doc?”

I am so excited to have my CT scan.

It is scheduled for a Saturday afternoon at 4:00.

Weird right?

Problem.

I have 3 children home on a Saturday. 

My husband needs to babysit while I have my CT but

I am frightened to drive to the hospital.

This is about a 25 minute drive on the freeway.

Oh well.

Take my chances.

Smash cut to me VERY patiently waiting with my

hospital gown on in the radiology waiting room.

I have noticed that my patience with anybody in the

medical field that could possibly help me in someway

is remarkably 

high.

Take as long as you Sister.

I get walked in to the enormous CT scan machine.

It’s beautiful matte finish with the words SIEMENS

beautifully

etched just above the opening.

“Just lay back and relax.”

My head was placed between two boards with foam

padding for comfort.

Okay, this isn’t too bad.

A plastic crate/face cover was place over my entire

face.

The shadows of tic tac toe were cast above by a

bright light shining in my face.

Okay, now I want out.

“This is to hold you head in place and help me with

the scan.”

“Are you ready?”

I am slowly pushed in just past my shoulders.

“Hold VERY still.”

“Okay.”

After a series of strange noises, I was done.

The tech was really nice to me.

I thought to myself, he must have seen something on

the computer screen.

What if he saw a brain tumor?

Now I must wait a week for the radiologists to read

the scan and send a full report to my ENT.

At this point, I am having 1 sometimes 2 HORRIFIC

attacks per day.

I cannot wait to get this show on the road.

Hurry up Mr. Radiologist, hurry the hell up!

I get a phone call from my ENT 3 days later on a Wed

afternoon.

“Hello Mrs. Ahlea, this is Dr. Wong.”

“Your CT scan results came

back.”………………………..Drum Roll Please

“SUSPICIOUS for 

superior semicircular canal dehiscence .”

Huh?

“What’s up Doc?”

“This means that there was no concrete evidence of

SSCD, just some small areas of suspicion.”

Swell.

“So what do I do?”

“Well nothing really. At this point we would not do

anything to treat this.” If you do have SSCD, it’s not

bad enough to

treat with surgery.”

I started to cry.

Back to square one.

WHAT IS WRONG WITH ME?

My  ENT said she was sorry that she couldn’t help me.

“Good Luck.”

OMG, I want to die.

I have to find an answer.

Every single moment of my life is lived in constant

fear of an attack.

This is no way to live. No quality of life.

Here comes the fun part.

Happy Spinning,

xoa

 

 

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Jane says:

Hello,
I am so sorry that you are suffering from a balance disorder.
I have one, too. Unfortunately, the only way that they will know (maybe) precisely what is wrong is to do the Rotator Chair Test. I tried, but I cried out and screamed too much. You can’t see a thing as they have goggles on, except for a red light, and the room is pitch black. You are spinning in a chair the size of an old-fashioned gas chamber. Finally, after really trying, I had to ask them to stop.
My ENT said that even with the results, my medication may still be the same. I finally have somewhat of a life after 43 years.
It’s not much but I can now go on things that move (I could not go on escalators, elevators, be a passenger in a car although driving could be difficult too, and forget about contemplating an airplane). But, guess what? I can do it, now. I still have difficulty in cars especially at high speeds and going down escalators, but it all has to do with visual which is part of your Vestibular.
Please see an ENT, a Neurologist that deals with balance disorders, and do go on the website VEDA or vestibular.org. They are also on Facebook and are very informative.
I wish you luck.
I have suffered and been mocked, humiliated, not taken seriously, but finally trusting that I was not ‘nuts’, my perserverence paid off. I’d never wish this disability on my worst enemy! Yes, I lived most of my life, but it is better late than never.
Oh, and if you have symptoms of anxiety, don’t let any doctor tell you that is what it is, ’cause that’s what they kept doing, handing out pills. They don’t work! Meclizine does, and if you have to take Valium and/or Xanax with it, then do so. They are the most effective medications that will help you with your condition.
I wish you peace and success. Don’t let anyone dismiss your ‘invisible’ disability. Yes, it is difficult to diagnose, but never ever give up!
I pray that you find hope!
Love and best wishes,
Jane



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