Re: My cholesteatoma story

[Guest guest]

Hello , and welcome!

Thank God you got checked when you did and didnt wait. Glad to hear that your surgery went well. My 8 1/2 year old daughter Alyssa has been battling c-toma for 2 years now and has had 3 surgeries, this past one being August 16th...same day as yours. She's recovering well and is back to school. Her drainage has subsided so she's been going without a cotton ball for about a week. It bothers her a little when the wind blows, I guess her ear is still sensitive. We won't know til next month and the last of her packing is removed how much (if any) hearing she has in her left ear. Before surgery, it says on her hearing test that it was a "severe profound hearing loss". I can't really tell how to read the graph for the hearing test (in frequency etc), but there are boxes with arrows going down at the 110 line, which I know is not good. Maybe someone who knows how to read these things can tell me. I keep meaning to ask the doc to explain it all to me and I always forget.

I have a question...when you had your last surgery 15 years ago, was it never explained to you to have follow up for the c-toma? Since the recurrence rates are so high, your doctor should have informed you that you needed to be followed for a number of years. It sounds like you have a good doc this time and he'll make sure you are followed-up.

Well, again, welcome and hope your recovery time isn't too long. I especially hope your ear gets some hearing back so you can enjoy your new stereo! My husband is an audio/video nut too!

Take care

[Guest guest]

,

Best wishes and prayers go out to you during your recovery. Please

keep us posted with further news. We hope your hearing improves and

you are completely recovered.

Terri

> I am recovering from tympanoplasty, mastoidectomy as well as

removal

> of cholesteatoma that took place on August 16. I was just

searching

> the net for hearing recovery times after this kind of surgery when

I

> found this forum. Even though my doctor said that I need to give

it

> a few more weeks to heal, I am frustrated that I still can't hear.

>

> I am 28 years old and had cholesteatoma removal surgery once

before,

> about 15 years ago. I remember the ordeal that was: 3 days in

> hospital, and at least a week at home. When the doctor this time

> around said I'd be in and out in half a day, I convinced myself

this

> surgery would be relatively minor. Well, it turns out the c-toma

> rendered my middle ear a total mess. A tendril wrapped itself

around

> my facial nerve, and part of the base of my skull was " eaten " away

> leaving my brain exposed! Ouch. However, surgery apparently went

> well with no facial paralysis and the hole in the skull was patched

> up with cartilage. The doctor also used cartilage to help support

> the eardrum in place, and used a prosthetic piece to reconstruct

the

> middle ear bones.

>

> Now I just have to deal with that pesky hearing loss. I just hope

> that my hearing returns to as " good " as it was just before the

> surgery. A bone hearing test shows a slight loss in hearing from

> just before the surgery, so I'm hoping that when all the packing in

> the middle ear dissolves, this will translate into better

conductive

> hearing. Wishful thinking? The doctor is good, and I trust his

> expertise.

>

> The most frustrating thing about this, is that I spent ALOT of

money

> on stereo/computer equipment a few months ago. I guess it was

> concentrating on the high quality audio that I realized I should

get

> my ears looked at again. You know the rest. We didn't know for

sure

> there was any cholesteatoma prior to the operation. It turns out

> that if I had waited another year or so, very serious damage to the

> brain and facial nerve would have resulted.

>

> I'll check back every once in awhile and will post on any hearing

> improvement.

>

> Thanks

>

[Guest guest]

Thanks for the replies. I neglected to mention that I had 2

surgeries about 15 years ago, one year apart. The second one was to

ensure the infection was removed. I was just a kid, so my parents

know the details better then me. This time, the doctor did a more

complete job and really carved out a big hole in my ear. I made the

mistake of taking a couple mirrors and a flashight to look inside,

and frankly, it freaked me out. It is still healing so it's scabby,

and I think I'll be wearing a cotton ball for a while.

I had moderate hearing loss before the surgery. It's amazing how

much that weakened ear performed. You don't know what you got until

it's gone. As I said before, I'd rather get back to that point then

remain in my current situation. I won't start getting really nervous

until 3-4 weeks from now. All I can say is time usually heals all

wounds.

Thanks again,

[Guest guest]

Just wanted to say I read your story and hope you can find some helpful

info. on the drainage. Sometimes I'll be blow drying my hair and that is the

only time I can smell a slight " weird " smell from my surgery ear. Otherwise,

no drainage. My surgery was recently, May 30th on my right ear. Left ear

will be done sometime this winter. Good luck.

>From: " rick13425 " <rick13425@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: My cholesteatoma story

>Date: Mon, 11 Sep 2006 19:10:54 -0000

>

> Hi, my name is Rick and I first found out I had cholesteatoma

>when I was 12, 8 years ago. Growing up I always had ear infections

>and pain in my ear, but due to a high pain tolerance, rarely did I

>complain to my parents of it. As I grew older, the ear infections

>increased and the doctor visits started piling up. After repeatedly

>being prescribed simple anti biotics for ear infections and never

>realizing it could be something worse, my ear decided it had enough.

>While at the ocean for vacation and after a heavy day of swimming, I

>felt the worst pain yet from my ear. Red puss and wax started

>funneling out, it smelled so bad the whole room would stink up.

>

> So finally my parents took me to an ent specialist who then

>referred me to an olologist (i think, not sure, been a long time) by

>the name of Dr.Prasad out of the baltimore, MD area, luckily he was

>close to my home in maryland. After mri's and other tests he deemed

>that I had cholesteatoma and immediately set up a date for surgery.

>The first surgery went okay, no hiccups or problems to speak of. The

>only thing was that the cholesteatoma had gotten so bad it wrapped

>around facial nerves and bones in the ear and couldn't be taken in

>one time. Instead of going behind the ear like he did, Dr. Prasad

>said he'd have to go through the ear canal and enlarge it to extract

>what he could. I had no problems recouping from the surgery, it was

>a little funny having to sleep with a cup around my ear and going to

>school eventually wearing a cotton ball, but there wasn't much pain.

>

> The next surgery was finally due and it went just as well as

>the first. Almost all of it was removed and a bone had to be taken

>out and replaced artificially (sorry for lack of description, i was

>young and couldn't retain the many specifics). My ear canal was

>enlarged and I was told for the rest of my life I would have to have

>it cleaned out every 3-6 months. This was a minor inconvience to

>facial paralysis I thought.

>

> So here I am now, 8 years later, 20 years old, and just now

>trying to look into the disease that could have taken my life. Im

>grateful for everything that has been done to prevent that from

>happening but still wish that it was something i wouldnt have to

>deal with forever. For me, I have a daily reminder of what I went

>through and what im still dealing with. The ear still leaks the

>brown and yellow puss and the smell is horrible, as bad as the first

>time.

>

> I guess my main reason for joining this group is to find

>people in my situation, people who still have cholesteatoma and are

>dealing with the effects of it in there daily life. If anyone has a

>similiar story and would like to share with me how they deal with

>the smell and the puss, hopefully a cure for it even, please

>respond. If your going through it and would like anymore information

>from me, please ask, I would love to be a help to anyone. My

>cholesteatoma was about as bad as it could get before meningitis, so

>I may have good information on pre and post op, how it feels to be

>put under for surgery, and anything else. Thanks for listening to my

>story, and I hope that we can help each other.

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Rick,

Sounds like your story is similar to mine! Apart I was 9 when they

found mine, and that was 10 years ago now! And ive been in and out

of hospitals since I was about 6! But I never had any ear

infections, at all! It was very strange! I have also never had any

pain with it either

And when my c-toma was removed, it was also very close to the facial

nerves, and the brain, the doctor said if it had been left any

longer I wouldnt be sitting here typing this today! Knowing this,

makes me thankful for every day, and believe I must be here for a

reason.

My ear canal was alos enlarged, pretty much get a bus down it!! And

the c-toma ate a lot of my mastoid bone up , and the bones in the

middle ear, although sadly, these were not able to be restored, and

thus I am deaf in my left ear. And i have been for as long as I can

remember, hearing aids don't work, but Im trying this Bone Anchored

Hearing Aid, basically i now have a screw in the back of my head!!

How often is your ear cleaned out? I was told it would only need to

be cleaned out every 5-10 years. Its been 3 and a half years since

my last op, to clean it out, not sure when the next will be,

probably when I graduate from Uni.

I dont, thankfully have to deal with any puss, but I have the

contstant reminder of it, as I cant hear, which is pretty

frustrating. And I worry about it coming back, and paralysing my

face, and no-one noticing.

Hope it hasn't affected you too much, you can still get on with your

life and do whatever you want to do, can't you?

Good Luck,

>

> Hi, my name is Rick and I first found out I had

cholesteatoma

> when I was 12, 8 years ago. Growing up I always had ear infections

> and pain in my ear, but due to a high pain tolerance, rarely did I

> complain to my parents of it. As I grew older, the ear infections

> increased and the doctor visits started piling up. After

repeatedly

> being prescribed simple anti biotics for ear infections and never

> realizing it could be something worse, my ear decided it had

enough.

> While at the ocean for vacation and after a heavy day of swimming,

I

> felt the worst pain yet from my ear. Red puss and wax started

> funneling out, it smelled so bad the whole room would stink up.

>

> So finally my parents took me to an ent specialist who then

> referred me to an olologist (i think, not sure, been a long time)

by

> the name of Dr.Prasad out of the baltimore, MD area, luckily he

was

> close to my home in maryland. After mri's and other tests he

deemed

> that I had cholesteatoma and immediately set up a date for

surgery.

> The first surgery went okay, no hiccups or problems to speak of.

The

> only thing was that the cholesteatoma had gotten so bad it wrapped

> around facial nerves and bones in the ear and couldn't be taken in

> one time. Instead of going behind the ear like he did, Dr. Prasad

> said he'd have to go through the ear canal and enlarge it to

extract

> what he could. I had no problems recouping from the surgery, it

was

> a little funny having to sleep with a cup around my ear and going

to

> school eventually wearing a cotton ball, but there wasn't much

pain.

>

> The next surgery was finally due and it went just as well as

> the first. Almost all of it was removed and a bone had to be taken

> out and replaced artificially (sorry for lack of description, i

was

> young and couldn't retain the many specifics). My ear canal was

> enlarged and I was told for the rest of my life I would have to

have

> it cleaned out every 3-6 months. This was a minor inconvience to

> facial paralysis I thought.

>

> So here I am now, 8 years later, 20 years old, and just now

> trying to look into the disease that could have taken my life. Im

> grateful for everything that has been done to prevent that from

> happening but still wish that it was something i wouldnt have to

> deal with forever. For me, I have a daily reminder of what I went

> through and what im still dealing with. The ear still leaks the

> brown and yellow puss and the smell is horrible, as bad as the

first

> time.

>

> I guess my main reason for joining this group is to find

> people in my situation, people who still have cholesteatoma and

are

> dealing with the effects of it in there daily life. If anyone has

a

> similiar story and would like to share with me how they deal with

> the smell and the puss, hopefully a cure for it even, please

> respond. If your going through it and would like anymore

information

> from me, please ask, I would love to be a help to anyone. My

> cholesteatoma was about as bad as it could get before meningitis,

so

> I may have good information on pre and post op, how it feels to be

> put under for surgery, and anything else. Thanks for listening to

my

> story, and I hope that we can help each other.

>