Cholesteatoma- 7 year old

Hello,

I'm sorry that I can't help with regard to finding a surgeon but thought I'd share my experience with you. My 12 year old daughter had surgery to remove an extensive cholesteatoma last year. It was more extensive than first thought and she lost all her ossicles. Her recovery from surgery was good with no added complications. She is very matter of fact about her conductive hearing loss on her left side. She says it's fine as she can hear perfectly well with her right ear. She had canal wall down surgery. She suffered an infection with the ominous foul smelling discharge in June this year and has other symptoms that might be related such as dizziness, headaches and nausea. She is being monitored currently.

Good luck in finding a good surgeon. I found it impossible to find surgeons experience on cholesteatoma so maybe they deal with it more than we realise. Let me know how you get on.

Hi try not to worry, I fully understand as our 10 year old son has also recently been diagnosed. July 2012. We also live in Hertfordshire and was referred to Luton & Dunstable hospital. Our son was booked in for canal wall down surgery for August 28th. One week prior to surgery after doing lots of research on cholesteatome lwe were extremely anxious and went to see our surgeon to ask a few questions. We basically wanted to know why he had chosen canal wall down surgery and not canal wall up - also known as combined approach tympanoaplasty. He replied he only does canal wall down! He has now referred us to Great Ormond Street Hospital to discuss the other approach to surgery. Although both approaches have pros and cons we feel we need to discuss both options and then decide. Our own doctor could not refer us to GOSH but our hospital could. Our son has moderate hearing loss in his affected ear as the bones have eroded but it does not seem to cause him any trouble. Apart from his hearing another main concern of ours is the swimming aspect. If you want to discuss any more drop me a message. I, like you felt a little alone as I didn't know anything about this condition and didn't know where to turn for help/advice. Take careCaroline

Hi there,

I have an appointment today for my 5yr old to discuss an operation to remove a possible Cholesteatoma.

My son has had recurring ear infections for the past 2 years. The GP just kept prescribing anti-biotics until i asked for a referral to Bupa Cromwell Hospital for a second opinion. It cost us £ 600 for the consultant to clear all the debris out of my sons ear from his ear infection before prescirbing more drops. The drops did clear up the infection but it soon returned. The consultant then arranged for a CT Scan. The result of which showed erosion to the bones in his right ear. This was over 3months ago and my son has had more infections since. The consulatant is reluctant to operate even though he has told me that the only thing that can cause this kind of damage to the bones in the ear is Cholesteatoma. We are going along today to discuss the symptons again and find out how we go about confirming one way or the other if my son does have this condition.

Bit of a nightmare! If you do nothing the Cholesteatoma just keeps eating away but if you operate then this can damage facial nerves and hearing too!!!!

Hoping to have a clearer understanding of it today as i go armed with my list of questions for consultant and pre op team.

Will let you know how we get on.

Hope you have managed to find a surgeon.

take care Lesley

Hi Lesley

I hope your son's appointment went well today. I would be interested to know how you get on as my son has his appointment at Great Ormond Street a week Friday. Our 1st consultant at a local hospital has said that leaving it is not an option and it must be removed. I would be interested to know if they discussed the two types of surgery with you, canal wall up and canal wall down. One I believe requires further operations to see if it has returned.

I would really be interested in any information your consultant has given you in your case so we can be armed too with questions for GOSH next week. We have already been a week away from surgery and it was post-poned as we asked our questions too late!

Hope all has gone well

Caroline

Hi All,

Thanks so much for all your support to my original post. We are still reseaching on best option between the 2 approaches. We have been told to go for the approach that requires a second operation in 6-9 months time due to a secondary medical complication. Our operation date is due to be towards the end of October and we are just waiting now..good luck to all and hopefully we'll all see light at the end of this tunnel soon..

Hi my names mel im 26 and got diagnosed 3 years ago with choleastomas ive had two right combined tymphomplasty and mastoidectomy's and am having my thired op in 2 weeks time but this time on the left ear. I have poor hearing in both ears and have finally in the process of having made two hearing aids . I get reaccurent ear infections in my right ear which has been operated on and get dizzy spells frequently , my specialist is mr quinn he is the top guy in nhs hospitals in hertfordshire , i know very little off finally prognosised with choleastoma but im feeling positive about the future , i just wanted to say although u may feel frightened about this diagnosis but stay possitive u / ur children are in the best possible hands , the operations are not that bad yes there is pain involved but it is short lived . The care i recieved and am still recieving has always been excellent . Anyway i hope u feel more possitive now , i have no facial nerve damage , or any other major problems my hearing is slightly worse but its a small price to pay when u think of the alternatives . I live a normal life . Please reply i feel kind of alone having choleastoma and would like to talk to other suffers with this ..

Hi All

Firstly thank you for your msgs and secondly apologies for taking so long to respond. I have been back on a couple of times since my original post but for some reason my responses haven't registered - hopefully 3rd time lucky!!

Quick update for you all by 5yr old boy finally had his operation on Thursday 10th January at Chelsea & Westminster. Even before he went in for the operation we (my husband, the surgeon and myself) were still hopeful that it would turn out to be something as simple as a glue ear - the surgeon even put on the pre-op notes that they should put a grommet in!

After 2hrs of sitting in the waiting room, waiting for news on our son, we knew that our worst fears had been realised and that it was likely that it was a cholestatoma that the surgeon had found! This was confirmed when the surgeon finally came in and told us that he had indeed found the Cholesteatoma and that he was still shocked at how large it was! Considering from the CT Scan, it wasn't very clear as to what was going on in the ear. The surgeon informed us that amazingly, even though the diseased area was so large, the inner bones had not been damaged (from what he could see) and the facial nerve had not been damaged by the operation and he believes he has removed all of the infected area. We were informed that the cholesteatoma had been growing upwards towards the brain and that is where most of the damage has occured - it was very close to breaking through to the brain tissue. The surgeon also re-built the wall (wall up verses wall down) which he believes is the best way to prevent further infection, it does however mean that there will be another operation in a years time to check to make sure the disease has not returned.

We are now 3 days on. My son was discharged from hospital the same day although it took longer than expected as he kept vomiting due to the morphine administerd during the operation. His ear is still sore but he back to his usual energetic self. He also still has some blood weaping from his ear which we were told was to be expected. His ear is still numb to the touch. And slowly his taste is returning (this was the most upsetting part for him as he was unable to taste chocolate bless him :-)). He will go back to school on Monday and carry on as usual until we go back to the hopsital in 3 weeks to have the packing removed.

My observations:

My main concern is that our GP did not mention cholesteatoma as a possible reason for all the ear infections. I am also concerned that it was not picked up on the CT Scan and that it was left to us as parents to push for the operation to go ahead - had we not been so forceful our sons condition would have been left to eat it's way through to his brain with more devasting consequences.

Having had the operation, my sons ear looks like it has been put back in the wrong position although from reading and watching videos from other suffers this is normal due to the packing an swelling (although i will let you all know if this is not the case!).

I also want to know what fills the space of the removed cholesteatoma? And what is the likely hood that it will return. One step at a time!

I will let you know how we get on once the packing is removed. Hope you are all winning your own little battles and good luck Mel with your next operation. Let us know how you get on and thank you for your message which i read before my sons operation and felt much more positive.

take care all

Lx

Hello All,

I'm new to this site. My 9yr old son has just been diagnosed with congenital cholesteatoma and is due to have the op in April. It is great to find UK examples as a lot of other sites are mostly US/Canada and the system is so different there.

It seems from the CT scan that it is not spread too far and the consultant says the hearing and balance centres seem fine, however like L it was me who asked to have his hearing checked again which led to the scan. a problem with his hearing was first picked up at school but he had had no infections and his speech developed extremely well.

We went twice to the Children's hospital over a couple of years to have his hearing tested and they thought it was eardrum damage caused by infection even though I told the specialist he had not had any ear infections. after that they just said it would probably improve with time and that we didn't need to come back unless we were concerned.

I am now trying to find out out all about the surgery and the surgeon. It seems impossible to find information online about NHS surgeons and their experience and expertise - has anyone found anywhere?

We are going to Birmingham Children's Hospital which I assume should be good but how do you find out?

I am also just hearing about the canal wall up/canal wall down issue - our consultant didn't mention it except that he said the cut would be behind the ear, so I am going to ask if we can see him again as when we spoke to him before it was with our son and I was aware of not scaring my son by asking certain sorts of questions.

Dorcas x

Hi D,

Our consultant is also NHS and i just googled his name and found loads of information on him.

I find it quite bizzare that cholestatoma is so common and yet the doctors are so dismissive with the younger children advising us all that they will grown out of it. It seems that the only sure way to find out if there is an issue is to operate and it might be that at the end of the day it comes down to cost - which is sad.

Wall up/wall down. I didn't know too much about this before they operated on my son. I did ask the question in December but they said the ear would be closed up again and didn't really go in to detail. As i hadn't researched it enough i didn't really know what questions to ask. This is all to do with the inner ear - by all accounts if the wall is left down then the child is more suseptible to infection. My son had the wall up which means he will need another operation in year to make sure the Cholesteatoma has gone. As far as infections go, he has pulled the packing out (4 days after operation) and now has an ear infection!!!

Back to hospital on Friday for chekc up and seeing the consultant again next weds - hopefully all well.

will keep you updated - let me know if you want me to ask our doctor any questions about the ope - wall up / wall down.

L :-)

Hi L,

I tried googling but his name is Panagamuwa and apparently there are quite a few of them, I got mostly research papers but nothing about credentials.

I don't think they would even need to operate to find out about c-tomas a CT scan would have shown it had we had it several years earlier and infact when we first saw this consultant he knew there was something wrong when he used the little camera in my son's ear which was why he requested a scan. I just don't understand why that wasn't done before.

This consultant says congenital cholesteatoma (not associated with infections) is very rare and that is why it wasn't considered at first.

Thanks & Good luck with your next check up

D

Hi my son is 4 years old, he has just had his second op to remove more cholesteatoma, Michael has lost all 3 hearing bones and now wears hearing aids. He had his op in Feb but today has another infection so is on antibiotics, we have to see his surgeon on Friday to discuss the next move. He wants to take michaels wall down but am not keen on him to do this as he will never be able to get his ears wet, has anyone else had this? If you need a good surgeon Mr Hajioff in Bristol childrens hospital is superb, would recommend him to anyone. x

Hi, sorry to hear of Michaels problems, I hope his infection clears up soon. Our 11 year old son Callum had his first op in January at GOSH and they left the canal wall intact. A couple of his bones had eroded thought the cholesteatoma. Next op is planned for July. We were told it would be a series of operations where as the canal wall down was one op and he would have to go back for "cleaning of the air" every 6-12 months for life. Our local hospital was going to do canal wall down until I enquired about alternative surgery. I was very upset at the thought of him not swimming again. The surgeon told us he could be would be prone to infection and it would effect balance etc. I hope this helps you and best wishes for Michaels appointment on Friday.

By the way the surgeon was talking he wanted to take the wall down but I said no, like you, feel gutted that Michael could never go swimming, thinking of when he was older as well, when hes 18 the last thing he is going to want to do is go to hospital every 6 months to have his ears washed out. might come to it though because the surgeon said that it was as bad this time as last time. just wish it would all go away and he could be like any other 4 year old! Hope callums operation is successful . thanks for replying,nice to have someone to talk to about it!