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DONNA
Newbie
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Posts: 2


« on: August 10, 2011, 01:00:03 PM »

Hello everyone! Just thought I'd let you all know my story...I had a cholesteatoma when I was 13 - surgery lasted over 5 hours.  The surgeons left some of the disease in my ear as it was resting on the facial nerve and they did not want to remove it and risk paralysis.  I cannot hear below normal speaking voice in my "bad" ear but I'm used to it now.  I've had my 6 monthly check ups ever since (I'm now 25) and during an appointment in March my Consultant told me that he believes the the cholesteatoma has returned and that he wants to operate again.  I had another appt a few days ago and the consultant has now referred me for a CT Scan.  I'm scared as I didn't have a scan the first time round and I don't know why I need to have one now unless he suspects complications??? I have been having lots of dizzy spells and now feel totally deaf in bad ear.  :'(
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Theresa79
Newbie
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Posts: 3


« Reply #1 on: October 07, 2011, 05:15:37 AM »

Hi,

A CT scan is nothing to worry about. It is to see how extensive the C-Toma is and where it is, altho im surprised you didnt have one the first time around.

I have just been diagnosed for the 2nd time and am waiting for my CT scan date. Its just procedure so you musnt worry.

T
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belfastbaz
Newbie
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Posts: 2


« Reply #2 on: November 29, 2011, 05:18:06 PM »

Hiya Donna,

Please, please, please, get the op done.  I myself have had 4 ops on my left ear, and one on my right, all but one in the left ear to remove Cholesteatoma.  Not pleasant, but it had to be done.  I did the wrong thing, and let things run and run and run and run.  When they eventually discovered the Cholesteatoma, my consultant said exactly the same thing to me as yours did to you, and left some of the stuff behind.  What happened was that the Cholesteatoma eventually entangled and attacked my facial nerve on the left side of my face, developing Facial Nerve Palsy.  It has similar symptoms to Bells Palsy, but unlike Bells Palsy, which is caused by a virus, and usually only temporary, Facial Nerve Palsy is caused by a bacterial infection, which can in some cases, be attributed to Cholesteatoma.  The damage can be long lasting, even permanent.  I eventually developed stage 5 facial paralysis on the left side.  Stage 6 is total facial paralysis.  I am now down to about stage 2, but will probably not regain full use of the left side of my face.  I live with it, but don't think too much now about it.  The only regret I have is that I didn't do anything about it sooner.  I do have photos of my face, before the facial Nerve Palsy, when it was at stage 5, and what my face looks like now.  But what could have happened is that it could have spread to the brain, thereby becoming life threatening.  That was 3 years ago.

You may well end up with some facial muscle weakness post op, but the sooner you get it done, the better.  It takes a trained eye now to notice my facial nerve palsy, and people don't normally see it until I point it out to them.

Please, don't be scared.  Get the op done.  Cholesteatoma can be serious, even life threatening if it is not removed.  I'm not saying that to scare you; I am saying it because it is fact.  I know - I've been there.

Out of the 5 ops, I only had two CT scans, one of which was before my last op in October 2008.  It gives the consultant an idea of what he's facing, and where the various organs in the ear are.  It is to help him and to help you as well.  Without the CT, the consultant, is practically going in blind.  That's what my consultant told me.
« Last Edit: November 29, 2011, 05:28:56 PM by belfastbaz » Logged
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