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Cholesteatoma in both ears

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just had a operation to remove cholesteatoma in my left ear and have been told i have it in both and face a further operation this year but i'm not sure what the out come is going to be at the end.

please any info would be great .:help:

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just had a operation to remove cholesteatoma in my left ear and have been told i have it in both and face a further operation this year but i'm not sure what the out come is going to be at the end.

please any info would be great .:help:

 

I had one removed from my left ear 4 years ago very pleased with it and have had no trouble since. I go every year for it checking and now they have found that my right ear drum is turning in and suspect that that is going the same way. Did you have it done at the Hallamshire by a doctor Yeardley if so you are in good hands I can even go swimming now. Pm me if you need any more info.

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My daughter develped cholesteatoma when she was five (she's now 13).

 

After having several operations on that ear (they tried the softly, softly approach, but in the end had to do a complete removal and rebuild of her three bones inside the ear, can't remember what it's called).

 

She then developed cholesteatoma in the other ear and, rather than pussyfoot around again, we went straight for the big operation again.

 

Since that time (about 2 years now) she has suffered from a few bouts of ear infection, mainly contracted through either colds or after swimming (difficult when it's part of the curriculum).

 

Considering she's had both inner ears literally rebuilt her hearing's fantastic. She does wear an aid for mild/moderate hearing loss, as we found one ear has deteriorated over time - but that doesn't mean it will happen that way for everyone.

 

Speak to your consultant, he should give you all the facts.

 

It's something you need to rectify, the consquences of not doing so just aren't worth it!

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I was 60 when mine was discovered and they said it had been growing for years it was only when it started discharging and smelling vile that I knew anything about it by this time it had corroded the bone. It was well on the way to my brain as you say something that needs rectifying as soon as possible. Any hearing loss that I have now I just put down to old age but to be honest it's not much at all.

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just had a operation to remove cholesteatoma in my left ear and have been told i have it in both and face a further operation this year but i'm not sure what the out come is going to be at the end.

please any info would be great .:help:

 

Cholesteatoma is a serious disease of the inner ear, which can cause deafness, facial paralysis, vertigo (loss of balance) and other problems, and in extreme cases can lead to death.

 

The condition can only be treated by surgery.

 

My daughter, when aged 12, developed cholesteatoma first in one ear, then the other. She has a history of ear infections and in her lifetime she has now had more ear operations than birthdays (she is now 30 by the way).

 

The cholesteatoma unfortunately required radical surgery (lasting 5 hours and 3.5 hours respectively - the operations being 1 year apart) via the skull, and included bone removal. One ear had to be operated on again 2 years later, though this was done via the ear canal.

 

As a result of this radical surgery my daughter's hearing is now permanently impaired in both ears (she is now 40% deaf) and she wears two hearing aids to compensate.

 

My daughter's cholesteatoma was advanced, and complicated by other factors including constant ear infections (from age four). Not only her health but her very life was threatened by the choleasteatoma. The surgery was difficult and not without risk of facial paralysis itself (as the surgeon had to operate extremely close to a facial nerve).

 

Friends asked at the time how we could possibly consent to the surgery on our daughter, given the grave risks involved. Surprisingly, the decision was very easy for us to make, as given our daughter's condition at the time, death from meningitis, brain tumour or something similar was otherwise almost inevitable.

 

Cholesteatoma is a destructive disease which can only be treated by surgery, but you may be able to have an operation via the inner ear, rather than via the skull. But you should have the operation in your other ear (and then be monitored to ensure it does not come back in either ear) as cholesteatoma will cause serious, possibly even life-threatening, complications to your health.

 

There is no reason why you should not then enjoy a happy, and illness-free, life.

 

For further information - see these links:

http://www.deafnessresearch.org.uk/factsheets/cholesteatoma.pdf

http://en.wikipedia.org/wiki/Cholesteatoma

 

Best wishes jonny121.

 

red

Edited by redrobbo

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For Mrs.Redrobo

I am 36 yrs old and I am in the same situation as your daughter, with lots of operation and ear troubles for whole my life.At the last cholesteatoma removal, doc reconstructed my ear bones, resulted in improved hearing for 3 hours and then something happened and I completely lost hearing in my only good ear.

Now I am cochlear implanted and still fighting,cholesteatoma is approaching to my brain, with the danger of brain abcess, meningitis and fatal complication.The last operation lasted 6 hours.They managed to save my implant.

Overall I am healthy, young woman, with 2 sons and one wonderful supportive husband.No one could see the problems I fight with.

I had done a lot of research, I try to change my diet(less meat, diary, processed food) which is difficult because I cook a lot, I try to use less chemicals but still have no answer.We still have to fight.

Please send all my best wishes to your daughter.

Regards,

Adriana

PS: Please excuse my spelling, as English is not my native language.

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After suffering constant ear infections since a very early age, and grommits twice myson (now aged 14) had his operation(over 5 hours) for the removal of cholesteatoma in September. The disease was well advanced and was complicated as the disease had eroded one of the bones in his ear and caused lots more damage.

They originally thought he had the condition in both ears but thankfully he hadn't.

In march we go back for hearing test and a check up to make sure everythings ok.

The scarring is still tender, and I know it still causes him problems but he's been an absolute star, never moans about it.

Am hoping the hearing test goes ok but as he is missing a bone I fear there may be more ops to implant one.

Its a horrible disease xx

Edited by lyndix

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After discovering I have it in both ears, I'm now deaf in my right side after a operation last year and I'm going in for my left side to be operated on this Tuesday, I really hope it turns out for the best for your son

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After discovering I have it in both ears, I'm now deaf in my right side after a operation last year and I'm going in for my left side to be operated on this Tuesday, I really hope it turns out for the best for your son

 

Awww Jonny I really hope all goes well on Tuesday, I will be thinking about you.

I really appreciated the support when my son had his op so if I can return the favour and you need a chat then just message me.

Thankyou and good luck xx

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After discovering I have it in both ears, I'm now deaf in my right side after a operation last year and I'm going in for my left side to be operated on this Tuesday, I really hope it turns out for the best for your son

 

Hi jonny I was wondering how you went on. Sorry to hear that you are now deaf in your right ear and hope that the left one goes well for you. My left ear is still not to bad after my operation but I now have to have an operation on my right ear I go on the 28th of February for another check up but don't know when they are operating yet but sometime this year. lyndix they thought that mine was in both ears then said it wasn't but when they did the yearly check up they said it is now in my right ear. make sure that your son doesn't neglect going for his check ups I know what teenagers can be like but it is better that if it does get in the other ear it is caught in time.

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Hi jonny I was wondering how you went on. Sorry to hear that you are now deaf in your right ear and hope that the left one goes well for you. My left ear is still not to bad after my operation but I now have to have an operation on my right ear I go on the 28th of February for another check up but don't know when they are operating yet but sometime this year. lyndix they thought that mine was in both ears then said it wasn't but when they did the yearly check up they said it is now in my right ear. make sure that your son doesn't neglect going for his check ups I know what teenagers can be like but it is better that if it does get in the other ear it is caught in time.

 

Yeah Thanks silly! I'm absolutely paranoid about it, to the point where I "sniff" him whenever I get the chance.(which he hates)

Although he dosn't have it in the right ear at the moment they did find a hole in his eardrum which can cause air to be sucked in and start the cholesteatoma. I know its gonna be a lifelong thing keeping a check on this and I think we just have to keep our fingers crossed.

Hope all goes well with your op as well, keep us posted xx

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