Cholesteatoma - please read until the end.

[Guest guest]

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@... . 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