Discussions By Condition: Ears, Nose, Mouth & Throat conditions

On going problems since Cholesteatoma operation EIGHT YEARS ago and a plea for help

  • Posted By: simon turner
  • January 27, 2010
  • 02:14 PM

This might be rather long so please bear with me.

Back in 2008 I was diagnosed with Cholesteatoma and had to have a radical mastoidectomy etc to remove it. The operation was set to be 2 hours long, 8 hours later I was still not back on th ward, my wife was understandably very worried as she was still at the hospital waiting for me to reappear.
Sometime during the late evening I finally came round a bit from the anaesthetic, screaming in pain, I was promptly given a shot of morphine to stop the pain, I remember none of this, My wifes account of things is somewhat concerning, apparently the surgeon was, at the time stood at the bottom of my bed, in a panic and kept trying to get me to smile (I assume to check for facial parralysis) but either way he was in a panic, the operation had taken alot longer than it should have but we were assured that all was well and there are as far as we know, no notes of any surgical problems during the op in my file, if this were the case then why was I in surgery for so long (8 hours for a 2 hour op) .
I was in hospital for a week before being allowed home.

After that every thing seemed ok, except the fact that I didnt feel right, I was in pain, not just earache but real heavy dibilitating pain in my right ear, further appointments with the head of surgery at the ENT dept revealed I have a hole in my eardrum (I just want to note that very shortly after my op the original surgeon buggered off back to Australia, we like to think its a coincidence), anyway there I am with this hole, not a problem im assured, another small op to do a "fat plug" will close that hoole and all will be well when everything settles down.
So im booked back in for another op, the fat plug is done and everything is left to settle down, at the next visit to ENT im told that the fat plug was unsuccessfull, NOT what I wanted to hear. Im still in pain and still suffering discharge,
A further SEVEN operations over 7 years all trying fat plugs and tymnoplasty ALL failed to heal this hole inm my eardrum. The surgeon then said that he had no option but to redo the original operation, a full radical mastoidectomy again, I was alarmed, I had had enough of this and had lost all faith in the surgeon, I wanted a second opinion and was referred to a leading specialist at a well known hospital. The new surgeon was calm and listened to what I had been through, he tried various "minor techniques" to close the hole, but with no success, late last year we opted for another crack at surgery and I was admitted for yet another fat plug.
Now, for the first month I was fine, I had no more pain, I felt great and I LOOKED great, I had bounds of energy and felt like I hadnt felt in years, I was happy and releived it was all over, then came the follow up appointment this time with the surgeons registrar rather than the surgeon himself. The hole has NOT closed, but as I was no longer in any pain we left it and a normal follow up appointment given for 6 months time (nothing unusual there, all Cholesteatoma patients are reviewed at 6 monthly intervals for the rest of their lives), then things went down hill, I started having earaches again followed by discharge of clear yellowy liquid and very very smelly, I looked like ***l again and had no energy no motivation to do anything, my head feel lopsided and heavy on the right side and my concentration levels are well down, on a bad day I stop driving, as my work depends on it this has finacial implications for me.
Today ive been back to see the surgeon, initially I was told I was to see his registrar, I was having non of that, I wanted to see the surgeon as he knows me and knows the history of this case.
He has put some steroid based gel in the ear at the moment to see if that takes the angry inflamation away but ive had that before and hold out no hope of sucess and im to see him in two weeks time.

If there are ANY doctors on here who can shed some light on wats going on I would be very greatfull to hear from you, im desperate, I cannot go on living my life like this, the discharge when it happens is so severe it runs out of the ear and im continually "mopping up", my head feels heavy on that side and "thick" (its hard to explain exactly how it feels) and its controlling and ruining my quality of life.

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3 Replies:

  • A small update the ointment thats been put in the ear is "Betnovate".Im due to see the surgeon again on the 17th February but he is "minded to reer me to one of his colleagues with a view to obliteration of the cavity and canal".Now, I dont know what that is exactly but it scares me, I THINK that means closing and sealing the ear which for me is NOT an option, the loss of hearing on that side is bad enough but to lose it completely is something that I cannot contemplate, its hard enough as it is to cope with the loss and reappearance of some hearing all the while without losing it permanently. Im sick of this, im scared and I dont know what to do for the best. Im losing faith fast in this surgeon too.
    simon turner 1 Replies
    • February 4, 2010
    • 10:38 PM
    • 0
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  • A small update the ointment thats been put in the ear is "Betnovate".Im due to see the surgeon again on the 17th February but he is "minded to reer me to one of his colleagues with a view to obliteration of the cavity and canal".Now, I dont know what that is exactly but it scares me, I THINK that means closing and sealing the ear which for me is NOT an option, the loss of hearing on that side is bad enough but to lose it completely is something that I cannot contemplate, its hard enough as it is to cope with the loss and reappearance of some hearing all the while without losing it permanently. Im sick of this, im scared and I dont know what to do for the best. Im losing faith fast in this surgeon too.Hi Simon, this sounds very similar to my case, I have had both ears done, 10 years down the line my ears are extreamly itchy right upto the ear drum, I rely on daily application of betnovate. I only suffer from continuous, clear, watery discharge from the right ear though. I have earing-aids in both ears, although this makes the whole problem worse as the ears sweat. I will be keeping an eye on your posts to see if anyone has any hope. Take care. Mel
    Anonymous 42789 Replies
    • February 15, 2010
    • 02:31 PM
    • 0
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  • Have the surgeon remove the ear drum. maybe a prosthetic is available. I have cholesteatoma and my first surgery went "well". If you can get a hold of Dr. Ottie from Kaiser, He is in Bellflower, CA "head neck and surgery dept". I would highly recommend him and his team. He had spoken of worst case scenarios to me, one is which you are in, and what to do after. 800-823-4040 (ask for the head neck surgery dept. Once you are transferred ask for dr Ottie
    Anonymous 1 Replies Flag this Response
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