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 on: April 27, 2013, 09:00:49 PM 
Started by crust - Last post by Mike in VT
If it is bothering him that much it needs to be done before he either goes deaf permanently or worse the thing invade his facial nerve or even worse his brain.
get one that does these regularly. if he wants to trade services he'll have to put that up front with the doc.
I just had my right ear cholesteatoma removed and with that a new eardrum and prosthetic hearing bone.
only 7 days ago. the surgery is a necessity and the only option. most hospitals offer 50% off for the uninsured so he needs to have that conversation with a hospital. Hospital's also use a lot of tile so he might be able to swing a deal there also.
this is normally  same day surgery. no overnights required.

 on: April 27, 2013, 08:33:36 PM 
Started by MJR - Last post by Mike in VT
Let us know what the CT revealed. to the right set of eyes it should be evident in
a minute or less whether this is a Cholesteatoma.

I just had a cholesteatoma removed on April 19 2013. i'm on my 7thday of recovery.
if you have one there are no alternatives. (well one. don't have it and go deaf or worse)
on a scale of 1-10, 10 being the worst, my pain has been a 3 or so. and i only seem to need
the pain meds once each evening. i get occasional pain spikes that shoot by my ear but it probably has
more to do with healing and so on. my ear packing comes out this thursday.
the swelling has come down each day and the feeling in my ear has been like an earplug that went in WAY
too far and in much longer than it should.
i had the cholesteatoma removed and due to the fact in had engulfed the malleus and incus they were
taken out along with the ear drum and replaced with a titanium thing and a eardrum being built from
nearby materials,(muscle lining-temporal fascia)
my mastoid had been infected and rehealed so many times over the last
30 years that it resembled a shin bone,there were no air spaces left.
i never had much in the way of symptoms other than at least one or two ear infections every year and those ALWAYS followed a cold. November of 2012 my ear canal ruptured and spewed blood so that was
my entry into the cholesteatoma discovery.
it's done. and the surgeon did the best i could ask for.
will update as my healing continues.
keep us posted and best of luck.

 on: April 26, 2013, 08:13:40 AM 
Started by JaneyJane - Last post by DonnaBroadhurst
Hi Jane, I am also from Ireland, i have had 2 operations on my right ear to remove CTOMA the last one was 4 years ago, for a while now i had been suffering with constant popping (retracted eardrum, pain in my left ear) which my consultant had been keeping an eye on. Three weeks ago she decided to put me under a general and take a good look at the ear drum unfortunately i have been told i now have CTOMA in my only hearing ear and i'm awaiting a CT appointment to determine how bad it is and what kind of surgery she will perform.

My advice to you is pester your ent for a CT scan, although i am gutted with my results i am not surprised as i feel we all know our own bodies and mine was telling something was wrong.

Love to know where in Ireland you are from and where you have been getting your treatment. My Ent is Mrs Lang in Waterford.

All the best
Donna   Smiley

 on: April 18, 2013, 11:44:53 PM 
Started by gkveda - Last post by gkveda
Cordial thanks for your reply Lisa.

It is very encouraging to know that the taste will come back after several months. As of today, I am still waiting for the taste to come back. It is almost 4 months. I am not sure how many more days i need to wait for my taste.

As far as fluid movement is concerned, how do they remove the fluid ? Does it require surgery again or is it something like inserting a needle and pulling out ? Curious to know. Have not met the doctor yet since I assumed it would go away after some time.. Your reply confirms that visit to doctor and undergoing pain is a must Sad

Please reply. Waiting for your reply

 on: April 16, 2013, 07:37:23 PM 
Started by crust - Last post by crust
My adult son has had a cholesteatoma for some time and has been putting off its removal. He is getting progressively more deaf and now it is hurting him like crazy. He is a independent tile setter with no insurance and he is hell bent on finding a doctor who will trade services. I told him this is a pretty unlikely scenario to pull off. Can anyone refer me to a good Minnesota surgeon for this?

 on: April 15, 2013, 03:41:12 PM 
Started by MJR - Last post by MJR
 Shocked Hi All, not sure if there are recent stories, etc.  but I was just told to order a CT scan for C toma.  I have had ear problems, and hearing loss all my life.  Currently wearing hearing aids. My ENT dr told me that I should not have neglected coming in to have him clean my ears.  I told him if I didn't think it was needed than why would I? Well, now I know. Sad My CT scan is April 30th.  Hope it comes out that all is well, and no surgery is needed. 

I didn't catch the messages about the recovery time on the surgery. Can anyone tell me? I mean can I go to work soon afterwards?

 on: April 15, 2013, 11:17:08 AM 
Started by gkveda - Last post by Lisa Y
I have had 8 cholesteatoma surgeries...4 in each ear. i had to go into the doctor manymany times after surgery to have the drainage sucked out so that may be your answer. It is so annoying to hear that whooshing sound. I can remember. After my surgeries, I would have a metallic taste in my mouth, but it always went away within several months.
If you'd like to read more about my cholesteatoma story, check out my blog, "I am surviving cholesteatoma" at

I wish you the best!

Lisa Y

 on: April 15, 2013, 11:12:01 AM 
Started by lynntabor - Last post by Lisa Y
I was diagnosed with cholesteatoma when I was 20 years old but the doctors think I was born with it. I always tell people who have children diagnosed to be glad that it was found so early. I truly believe that can make a major difference. I think because my disease was found so much later that I had to have eight ear surgeries during my 20s. However, I have not had a surgery for 15 years! I do wear hearing aids and I love them! I know this is VERY scary for a parent, and my best advice to you is to watch it, even after surgery to see if there looks t be any symptoms of it coming back. If you'd like to read my personal cholesteatoma story, my blog "I am surviving cholesteatoma" is at (cut and paste)

I wish you the best!

Lisa Y

 on: April 11, 2013, 06:18:26 PM 
Started by lynntabor - Last post by lynntabor
 Embarrassed.. just found out my four year old has a cholesteatoma in her right ear, small one with minor hearing loss... in her left ear, the ear drum has collapsed and is completley wrapped around her hearing bones.....that ear has severe hearing loss.  They have scheduled surgery for the left ear first and expect to do a complete tympanoplasty....the other ear will be looked at while in surgery and then will probably have to do the same surgery on the right after the left heals.....I am wondering if anyone has had similar experiences and if anyone can tell me if their hearing improved after all said and done....I am so worried that my little girl will not be able to hear.  My oldest brother had similar situations as a child and lost 30% hearing in one ear, my other brother is deaf in his left and and wears a hearing aide in his right...Any advice....

 on: March 27, 2013, 05:30:48 AM 
Started by gkveda - Last post by gkveda
I got my Cholestoatoma surgery on 22nd Dec 2012. Post surgery, i am facing two issues.

Issue 1: The liquid used to whooze out regularly post Surgery. When i met Doctor, he said, the liquid is not usual infection discharge that used to be there  earlier. However, when the bone is exposed to atmosphere, the iodine content from the bone keeps discharging out. And as the skin grows over the bone, this discharge will stop.

Now, the discharge has completely stopped the ear is completely dry, since the skin has grown completely. However, when i sleep and turn from left to right OR right to left, i sense some fluid movement inside the ear.

My question is, can this fluid be removed by Doctor or will it dry out automatically inside? This is very irritating since, I cannot do anything but just to experience the movement of fluid..

Issue 2: I lost my taste sense after surgery. When I met doctor and asked him about when i can regain the taste sense, he said, i may get it after 6 months Max or i may lose the taste sense permanently. Is there any one who has happened to lose the taste sense permanently ? if yes, since how long ?

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