Guest guest Posted December 4, 2009 Report Share Posted December 4, 2009 Bilateral C-tomas are well known. It is always better to get them removed Dr. Gupta Arun,India On 12/4/09, womenwales <saraflay@...> wrote: HI,my son has just had surgery on his left ear for a cholesteatoma, he had one in the right in 2007 he is 7 years old. Has anyone else had them in both ears? Docs are talking about hearing aids now as he only has 1/2 his hearing. Will they help? Will they cause more problems because they block the ears? Please give a mum who is sick with worry some advice from your experience. thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2009 Report Share Posted December 4, 2009 Hearing aids will help with hearing. My husband works with a young man in his 20's whom had cholesteatomas in both ears as a child with numerous surgeries - he wears hearing aids and has for years - he said for him it is like someone that may wear glasses - he never leaves home without them. I didn't develop my cholesteatoma until I was in my early 40's but did purchase a hearing aid until my titanium prosthesis was put in. From: womenwales <saraflay@...>cholesteatoma Sent: Fri, December 4, 2009 5:06:27 AMSubject: i am new and confused HI,my son has just had surgery on his left ear for a cholesteatoma, he had one in the right in 2007 he is 7 years old. Has anyone else had them in both ears? Docs are talking about hearing aids now as he only has 1/2 his hearing. Will they help? Will they cause more problems because they block the ears? Please give a mum who is sick with worry some advice from your experience. thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2009 Report Share Posted December 6, 2009 H. I thanks for the replies. Yes I think hearing aids will be the best way to help him. He is recovering right now and so it's a little way off before they fit them but when they do I wonder how he will find it. Has anyone encountered bullying as a result of wearing them? Imean he is only 7 and a lot of school years left Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2009 Report Share Posted December 7, 2009 Hi, My son is 7 now and had his Ctoma removed last year. he wears a hearing aid and loves it. He has lost it at the moment, and is really missing it. I find that without it, he does not answer and misses out on what is going on around him. He also has an FM system for school. The teacher wears a microphone and the voice is fed straight into his hearing aid. I am not sure where you are, but if you are in Australia, these are both supplied for free. I would say to go for the hearing aids but please be aware that children do lose things and train him to be careful. > > HI,my son has just had surgery on his left ear for a cholesteatoma, he had one in the right in 2007 he is 7 years old. Has anyone else had them in both ears? Docs are talking about hearing aids now as he only has 1/2 his hearing. Will they help? Will they cause more problems because they block the ears? Please give a mum who is sick with worry some advice from your experience. thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2009 Report Share Posted December 7, 2009 HI thanks for the reply, I am in the UK but have already heard of the system you are talking about. There are a few deaf children at his school so at least that is covered. Were you shocked to discover he had a c'toma? did you know before surgery or when the doctor came from theatre? As for always losing things, he is a little oblivious most of the time but hasn't lost the ear plug he has for the other ear and he has had that 2 years but there is always a first time lol! Thanks for the support > > > > HI,my son has just had surgery on his left ear for a cholesteatoma, he had one in the right in 2007 he is 7 years old. Has anyone else had them in both ears? Docs are talking about hearing aids now as he only has 1/2 his hearing. Will they help? Will they cause more problems because they block the ears? Please give a mum who is sick with worry some advice from your experience. thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2009 Report Share Posted December 7, 2009 Hi, My son went in for surgery for grommets (tubes) and the doctor came out and said he had a ctoma. Honestly, the way that the doctor spoke to us, he didn't seem to think it was a big deal. We went back to see him two weeks later and he had the results of the biopsy, and he started talking about the op he needed to do. Then we panicked. So, it wasn't an initial shock, but a delayed shock once explained to us. We didn't even know the name of it until the follow up appointment. I think he was trying to calm us down so that he could talk to us before we started researching on the internet. He had another patient waiting for surgery when he told us about the 'find' so he couldn't really talk to us. My son usually doesn't lose anything, but there is a first time and it had to be an expensive hearing aid. At least it is replacable through our government scheme for free! Good luck with it all. > > > > > > HI,my son has just had surgery on his left ear for a cholesteatoma, he had one in the right in 2007 he is 7 years old. Has anyone else had them in both ears? Docs are talking about hearing aids now as he only has 1/2 his hearing. Will they help? Will they cause more problems because they block the ears? Please give a mum who is sick with worry some advice from your experience. thanks > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2009 Report Share Posted December 7, 2009 Hi, Another reply. I had the teacher 'introduce' his hearing aids to the class and the wider school community. We explained why he had them and also what they do. It was also explained about them being personal property and noone was allowed to touch them. The whole school did a personal respect course thing at the same time and they talked about differences and the way that people all are different. It also helps that he is at a school with only 140 children in 8 grades, so there is a lot of opportunity to talk to all children together. Since my son got his hearing aids, two more children have come to the school with hearing aids with no hassle. I am now the parent that the school refers the other parents to to talk about strategies to deal with hearing aids. Good luck, but we have had no issues. > > H. I thanks for the replies. Yes I think hearing aids will be the best way to help him. He is recovering right now and so it's a little way off before they fit them but when they do I wonder how he will find it. Has anyone encountered bullying as a result of wearing them? Imean he is only 7 and a lot of school years left > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2009 Report Share Posted December 9, 2009  "rachelrowan99" <rachelrowan99@...> wrote: > I have had ongoing problems with both ears since i was >about 6 years old, I have had skin grafts on both eardrums >over the years one aged 10 on my right ear then again aged 18 >on both ears. Both skin grafts were successful however my >hearing in my left ear has never been as good as my right ear >and the eardrum is alot thinner than it should be i also have a >retraction pocket in my my left eardrum. I have been under the >same hospital for ongoing annual checkups since the age of 6. >6 Months ago i saw a consultant who said i needed to come >back and see the senior consultant who has just diagnosed me >with cholesteatoma of my left ear. I have been told i need to go >for a ct scan before probable surgery. While i understand surgery >to ensure i can still hear into my older years i was wondering if >there is anyone out there who has surgery on cholesteatoma, >what it involves and how their hearing was affected afterwards. >My job is completely reliant on my hearing and should it deteriorate >then i will no longer be able to carry out my job that i trained for > years to qualify in. Any advise be gratefully appreciated. I am from UK>Hi , I am also from the UK and your story sounds very much like mine - years of ear problems starting in early childhood, then a diagnosis of Cholesteatoma much later on. Let me first say that I agree with everything which Sue said - your Consultant's first priority is to eliminate the disease and give you back a healthy ear. However, in all but the most severe cases it is possible to reconstruct the middle ear to provide some level of hearing function. This will not necessarily be attempted at the first surgery, it's more likely to be done during the "second look" surgery providing the Cholesteatoma has not recurred. I had surgery on my left ear about nine years ago. My hearing in that ear is not as good as it was prior to surgery - apparently the disease itself was conducting sound in place of the ossicles that it had damaged - but it still functions. I also have a pair of NHS digital hearing aids, which are absolutely brilliant although they can be a little bit overpowering at times - I'd become too used to managing with reduced hearing, lol !! When you next see the Senior Consultant, make sure you impress on him/her your hearing concerns - there is no harm in letting it be known that you need as much hearing to be preserved as is possible. Out of curiosity, what is it that you do that is completely reliant on your hearing ? , Milton Keynes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2009 Report Share Posted December 9, 2009 Hi This new consultant that i am seeing seemed to imply that some sort of surgery would be required but needed the ct scan and results 1st before operating which is fair enough. I am trying to get them done privately as the nhs is going to take until end of march for me to get the results. What i do that requires my hearing is, i am an air traffic controller so i wear a headset allday at work and speak to pilots while looking at a radar. My consultant is fully aware of me need for good hearing for my job, luckily my right ear has pretty normal hearing as the skin grafts i had on both eardrums a few years ago was successful on my right ear. As for the level of hearing i may or maynot have after the operation, my old consultant who retired a couple of years ago but who had been my consultant for over 20 years i vaguely remember him saying my hearing was only pretty normal in my left ear because the eardrum was touching the middle ear bones. Hence i am worried for the results the ct scan is going to provide. My work will be very good and support me through any operation i may or maynot need. I just hope that after any operations my level of hearing is sufficient to allow me to pass the audiogram for my medical i have to hold on my license for work. > > I have had ongoing problems with both ears since i was > >about 6 years old, I have had skin grafts on both eardrums > >over the years one aged 10 on my right ear then again aged 18 > >on both ears. Both skin grafts were successful however my > >hearing in my left ear has never been as good as my right ear > >and the eardrum is alot thinner than it should be i also have a > >retraction pocket in my my left eardrum. I have been under the > >same hospital for ongoing annual checkups since the age of 6. > >6 Months ago i saw a consultant who said i needed to come > >back and see the senior consultant who has just diagnosed me > >with cholesteatoma of my left ear. I have been told i need to go > >for a ct scan before probable surgery. While i understand surgery > >to ensure i can still hear into my older years i was wondering if > >there is anyone out there who has surgery on cholesteatoma, > >what it involves and how their hearing was affected afterwards. > >My job is completely reliant on my hearing and should it deteriorate > >then i will no longer be able to carry out my job that i trained for > > years to qualify in. Any advise be gratefully appreciated. I am from UK > > > > > Hi , > > I am also from the UK and your story sounds very much like mine - years of ear problems starting in early childhood, then a diagnosis of Cholesteatoma much later on. Let me first say that I agree with everything which Sue said - your Consultant's first priority is to eliminate the disease and give you back a healthy ear. However, in all but the most severe cases it is possible to reconstruct the middle ear to provide some level of hearing function. This will not necessarily be attempted at the first surgery, it's more likely to be done during the " second look " surgery providing the Cholesteatoma has not recurred. > > I had surgery on my left ear about nine years ago. My hearing in that ear is not as good as it was prior to surgery - apparently the disease itself was conducting sound in place of the ossicles that it had damaged - but it still functions. I also have a pair of NHS digital hearing aids, which are absolutely brilliant although they can be a little bit overpowering at times - I'd become too used to managing with reduced hearing, lol !! > > When you next see the Senior Consultant, make sure you impress on him/her your hearing concerns - there is no harm in letting it be known that you need as much hearing to be preserved as is possible. Out of curiosity, what is it that you do that is completely reliant on your hearing ? > > , > Milton Keynes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2009 Report Share Posted December 9, 2009 The BAHA is a miracle!!! My daughter bilateral microtia/atresia, has a pair and a spare and won't go a moment without them~ Best thing since sliced bread! > > I have had ongoing problems with both ears since i was > >about 6 years old, I have had skin grafts on both eardrums > >over the years one aged 10 on my right ear then again aged 18 > >on both ears. Both skin grafts were successful however my > >hearing in my left ear has never been as good as my right ear > >and the eardrum is alot thinner than it should be i also have a > >retraction pocket in my my left eardrum. I have been under the > >same hospital for ongoing annual checkups since the age of 6. > >6 Months ago i saw a consultant who said i needed to come > >back and see the senior consultant who has just diagnosed me > >with cholesteatoma of my left ear. I have been told i need to go > >for a ct scan before probable surgery. While i understand surgery > >to ensure i can still hear into my older years i was wondering if > >there is anyone out there who has surgery on cholesteatoma, > >what it involves and how their hearing was affected afterwards. > >My job is completely reliant on my hearing and should it deteriorate > >then i will no longer be able to carry out my job that i trained for > > years to qualify in. Any advise be gratefully appreciated. I am from UK > > > > > Hi , > > I am also from the UK and your story sounds very much like mine - years of ear problems starting in early childhood, then a diagnosis of Cholesteatoma much later on. Let me first say that I agree with everything which Sue said - your Consultant's first priority is to eliminate the disease and give you back a healthy ear. However, in all but the most severe cases it is possible to reconstruct the middle ear to provide some level of hearing function. This will not necessarily be attempted at the first surgery, it's more likely to be done during the " second look " surgery providing the Cholesteatoma has not recurred. > > I had surgery on my left ear about nine years ago. My hearing in that ear is not as good as it was prior to surgery - apparently the disease itself was conducting sound in place of the ossicles that it had damaged - but it still functions. I also have a pair of NHS digital hearing aids, which are absolutely brilliant although they can be a little bit overpowering at times - I'd become too used to managing with reduced hearing, lol !! > > When you next see the Senior Consultant, make sure you impress on him/her your hearing concerns - there is no harm in letting it be known that you need as much hearing to be preserved as is possible. Out of curiosity, what is it that you do that is completely reliant on your hearing ? > > , > Milton Keynes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2009 Report Share Posted December 11, 2009 My son is 7yo and has been wearing a hearing aid for a year. He has not been bullied at all at school, but he gets a lot of questions about it. He now wears his hair long to try to cover the aid and prevent further questions LOL! I told him when asked, to say it is a computer for his ear. It has worked so far and he likes that explanation. It helped that there is a boy at our school a few years older who wears bilateral HAs (not for Ctoma, he was born deaf). But we haven't had any problems either. Best of luck to you and your son. Nina > > > > H. I thanks for the replies. Yes I think hearing aids will be the best way to help him. He is recovering right now and so it's a little way off before they fit them but when they do I wonder how he will find it. Has anyone encountered bullying as a result of wearing them? Imean he is only 7 and a lot of school years left > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009  wrote :- >What I do that requires my hearing is, I am an air traffic controller >so I wear a headset all day at work and speak to pilots while >looking at a radar. Hi , Ah, right. If you're in ATC then that explains it - especially in the UK where you have to cope with all kinds of interesting variations on "The English as she is spoke !" I assume you use a single-sided headset on your better ear ? I also used to have a job where I spent a long time on the phone while using a computer, so I used to use a single-sided headset as well. I had no problem with it, although I did look a bit strange with a headset on my right ear and a hearing aid on my left. >As for the level of hearing I may or maynot have after the operation, >my old consultant who retired a couple of years ago but who had been >my consultant for over 20 years i vaguely remember him saying my >hearing was only pretty normal in my left ear because the eardrum >was touching the middle ear bones. I'd be surprised if he put it quite like that - I believe the eardrum is supposed to touch the malleus in order to transmit the sounds. Perhaps he meant that the drum is sucked in and has wrapped itself around the ossicles ? This is how cholesteatoma often starts, and is usually a result of malfunctioning eustachian tubes which in turn is often the cause of ear problems in early childhood - as in my own case. It's good to hear your employer is being so supportive about this, that's one less thing you have to worry about. All you can do now is wait to see what, if anything, the scan reveals. And try not to worry, of course ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 Hi , I have Behind-the-Ear aids with ear tips (not ear moulds). They have a 'coil' setting, so I can use telephones and wear headsets. It's a pretty common feature, so I'm hoping that this might be a non-issue for you. I used to have In-the-Canal aids and they simply didn't amplify enough for my hearing loss. I am doing so much better with the more powerful aids. I'm in meetings a lot for my job and I'm so thankful my ability to hear has improved. Matt wrote: > > >  > > wrote :- > >What I do that requires my hearing is, I am an air traffic controller > >so I wear a headset all day at work and speak to pilots while > >looking at a radar. > > Hi , > > Ah, right. If you're in ATC then that explains it - especially in the > UK where you have to cope with all kinds of interesting variations on > " The English as she is spoke ! " I assume you use a single-sided > headset on your better ear ? I also used to have a job where I > spent a long time on the phone while using a computer, so I used to > use a single-sided headset as well. I had no problem with it, > although I did look a bit strange with a headset on my right ear and a > hearing aid on my left. > > >As for the level of hearing I may or maynot have after the operation, > >my old consultant who retired a couple of years ago but who had been > >my consultant for over 20 years i vaguely remember him saying my > >hearing was only pretty normal in my left ear because the eardrum > >was touching the middle ear bones. > > I'd be surprised if he put it quite like that - I believe the eardrum > is supposed to touch the malleus in order to transmit the sounds. > Perhaps he meant that the drum is sucked in and has wrapped itself > around the ossicles ? This is how cholesteatoma often starts, and > is usually a result of malfunctioning eustachian tubes which in turn > is often the cause of ear problems in early childhood - as in my own > case. > > It's good to hear your employer is being so supportive about this, > that's one less thing you have to worry about. All you can do now > is wait to see what, if anything, the scan reveals. And try not to > worry, of course ! > > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 Currently i have a normal 2 sided headset that are specific for our job, they are not the sort of headsets that you could buy yourself. I believe they cost hundreds of pounds. The headset has a microphone that you speak into with background noise cancelling. you can hear what is being said by pilots in both ears, plus if you have to make a telephone call at the same time to another airtraffic centre or sector you can hear them in the ear that the microphone is attached to, but if a pilot was speaking at the same time you would be able to hear 2 voices, 1 in each ear. hence i would have to be able to have some sort of hearing in both ears. Good news is i found out work would allow me to work with a hearing aid if i end up needing one! Got my ct scan this wednesday and results on 7th jan so it'll be good to know the extent of what i need doing. > > wrote :- > > >What I do that requires my hearing is, I am an air traffic controller > >so I wear a headset all day at work and speak to pilots while > >looking at a radar. > > Hi , > > Ah, right. If you're in ATC then that explains it - especially in the UK where you have to cope with all kinds of interesting variations on " The English as she is spoke ! " I assume you use a single-sided headset on your better ear ? I also used to have a job where I spent a long time on the phone while using a computer, so I used to use a single-sided headset as well. I had no problem with it, although I did look a bit strange with a headset on my right ear and a hearing aid on my left. > > >As for the level of hearing I may or maynot have after the operation, > >my old consultant who retired a couple of years ago but who had been > >my consultant for over 20 years i vaguely remember him saying my > >hearing was only pretty normal in my left ear because the eardrum > >was touching the middle ear bones. > > I'd be surprised if he put it quite like that - I believe the eardrum is supposed to touch the malleus in order to transmit the sounds. Perhaps he meant that the drum is sucked in and has wrapped itself around the ossicles ? This is how cholesteatoma often starts, and is usually a result of malfunctioning eustachian tubes which in turn is often the cause of ear problems in early childhood - as in my own case. > > It's good to hear your employer is being so supportive about this, that's one less thing you have to worry about. All you can do now is wait to see what, if anything, the scan reveals. And try not to worry, of course ! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Thanks everyone for your support and replies. I think it's going to be ok! He is a fairly relaxed kid and so if he can deal with two major surgeries, I am sure he will cope with the questions. Thanks again Quote Link to comment Share on other sites More sharing options...
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