Re: Cholesteatoma - please read until the end.

January 3, 2007

Wow. what a story. I can't agree enough with not waiting though I

have never heard a more convincing argument. The surgery crew spent 5

1/2 hours inside my ear scraping out tumor and cleaning up after

dissolved bone while my mother waited in the waiting room all that

time.

And while I am missing about half of my hearing in that ear I feel

very lucky they got to it before it got to my brain. I have a note in

my baby book from the elementary school nurse apologizing to my

mother for not having a working hearing testing machine for two

years. That has to make one think. Had it been caught earlier I might

live a perfectly normal life today.

But I also can not stress enough to others to follow up on other

methods besides what drs offer. Accupuncture helped completely rid me

of life long drainage problems. Check into allergies and remember

that the human animal is the only one who keeps drinking milk after

being babies. Maybe it is time we stop that. It is just not natural

and anything unnatural eventually comes around fully circle to hurt

us.

>

> Dear Cholesteatoma Crew:

>

> I have been lurking and I really feel it's time for me to speak up

a little

> today.

> To those of you who are contemplating putting off surgery, I would

like to

> offer my two-cents worth of advice.

>

> I am 46 years old with a long history of cholesteatoma, perhaps

even from

> age 4. I have had over 60 operations on my right ear and one on

my left. This

> includes myringotomies, stapendectomies, tympanoplaties,

mastoidectomies (I

> think canal wall down) and also craniectomy in conjuction with the

radical

> mastoidectomy (brain herniated through a hole in the covering of

the bones

> protecting the brain space and penetrated the aracnoid (spelling?)

area and

> further in until the brain herniated into the inner ear. As a

result, I have

> severe dizziness, double vision (which fluctuates) and seizures.

(for those who

> are new, I refuse to let you feel sorry for me, because my

children are

> top-notch, successful loving adults and my husband is equally

remarkable and I am

> a lucky woman!!!

>

> Despite the obvious challenges, I would DEFINETLY (yes, I say it

boldly!) to

> anyone to have surgery sooner rather than later! I let it go too

> long....and I also didn't listen to my inner voice (Spirit). I

was having strange

> symptoms, long after the ear pain, pungent discharge and itchiness

left me (good

> sign that your bones are nearly all but destroyed....). By the

time it

> was too late, I was feeling an occasional dripping in the middle

of my head

> (sign of cerebral spinal fluid leak), strange body sensations

(like my arms not

> belonging to me..then blacking out - signs of seizures), and

nearly feeling

> like I was losing my mind, my marriage and my children. Nearly

at the time

> I wanted to check myself into a mental institution, the

cholesteatoma was out

> of my control and now controlled my mind, literallly.

>

> I am the poster child for waiting too long. Please don't let it

happen to

> you.

>

> I work in Television Broadcast. I was at the top of my game, but

not a nice

> person.

> Now I am a nice person, so it was " worth the trip " , but it was a

long long

> road.

> Here's my advice from one who has been down " Cholesteatoma

Boulevard " :

>

> 1. Listen to your body.

> 2. Don't delay getting excellent professional medical help.

> 3. Cholesteatoma untreated, can kill you - be smart.

> a. brain abcess.

> b. meningitis

> c. encephalitis

> d. uncontrolled seizures

> e. death from any of the above.

> 4. Ear drops alone don't cure Cholesteatoma, so don't fool around

and wait

> too long for surgery

> 5. I'm not sure that surgery completely cures it either, but it

does

> alleviate symptoms and pain/infection.

> 6. You can live a long productive life if you stay on top of it.

> 7. Losing your hearing is not the worst thing in the world. (there

is too

> much noise in the world anyway!)

> 8. Losing your independence IS. (having driver's license taken

away due to

> seizures caused by cholesteatoma - it happened to me.)

> 9. Do your research! There are probably only 8 major best Neuro-

Otologist

> in the U.S. Get their names!

> Here is a partial list: ph Roberson, Warren,

Clough Shelton,

> Mansfield , and Brad Welling. Those names are coast to

coast. If you

> don't know who they are, you should. Be Smart.

>

> # 10. Email me anytime _LMShattuck@..._

(mailto:LMShattuck@...) .

> I am a real person, and I've got all my medical records and

pictures of my

> ear/brain surgeries. I am willing to talk to any or all of you,

if only to

> convince you all to take care of yourselves and the ones you love

who have

> Cholesteatoma, a rare, but serious disease.

>

> (P.S. If any of this has depressed or scared you, then I have

failed.

> Please let my words MOTIVATE you to take care of yourself, and

live a long and

> happy productive life. Chances are, you were scared before you

read this

> email. Let my words comfort you and motivate you. All of you who

have just had

> surgery, it will get better. Excercise, eat good, and make

ammends with

> people you love who you have wronged. Get right with yourself,

your God, and your

> family as far as humanly possible. Make the best of what you

have, and

> discover the beautiful language of ASL if you have to. The Deaf

culture and

> language is rich and wonderful! I have one foot in each world and

my life is

> hugely blessed! Encourage each other and take your body

seriously and yourself

> less seriously. Above all laugh, and if you can't, then email

me - trust

> me, I've nearly " lost it all " once over a period of 8 years, but

what I have

> now is so much better than what I had and I'm truly happy.

>

> Sincerely,

> Mrs. M. Shattuck, with the traveling companion of

> Cholesteatoma - my greatest teacher

>

January 7, 2007

,

You mentioned you had blackouts due to the ctomas. Can you tell me

more about your blackouts?

Over the past few years, I have had 3 occasions where I had

blackouts. I'll just describe the first one, which was the worst one.

I was driving home from work - a very familiar and often-traveled

route. One moment, I was almost home. The next, I was about 20 miles

south of where I was going! I had no idea where I was, and it took

some time to figure out my location. I had no memory of the

intervening time, all I know is I kept driving just like normal!

I saw a dr. (can't remember what specialty) who did a CT scan of my

brain, but found nothing unusual. He said he had only seen this in

one other patient. He attributed it to stress, possibly related to a

flare-up of a chronic illness I have. I have a friend with lupus, and

she said when she was very sick, the same thing happened to her

repeatedly because her body was so exhausted. I wasn't nearly as sick

as she had been, but it seemed like the only logical explanation. It

happened two more times after that, but for shorter time periods -

and both again while driving! Though I wonder if it happened other

times as well, and I just didn't notice.

This hasn't happened in more than a year. However, I learned I have a

ctoma about six weeks ago. It is the rare type, an external ear canal

cholesteatoma. My understanding is that the ctoma has grown into the

mastoid, but I don't know how extensive it is beyond that. Surgery is

scheduled for Feb. 11.

So now I wonder of the ctoma could have caused my blackouts. Would

the ctoma have to be pressing on the brain for this to happen? Any

insight you can give regarding your experience would be helpful.

Thanks so much,

C.

>