8 yr old just had surgery for cholesteatoma. Please help

[Guest guest]

Firstly I hope this message is approved by the group owner as my

husband and I are totally confused/upset/angry/ and frustrated by what

our 8 year old son has just gone through.

had surgery on 31/8 for cholesteatoma, we assume it was the

canal-wall-down procedure but haven't been able to speak to consultant

since op. before the op we were told that would lead a normal

life but last week a doctor told us that would only be able to

go swimming if he kept his head above water and he wouldn't be able to

jump in a pool, even a shower would be difficult !!!! Also his ear is

sticking out - will this go back to normal over time ?? there are lots

of things we would like to know and would like to ask, but i won't go

on now, i just hope this message is approved as I'm sure this group

could help.

-Marie, UK

[Guest guest]

My eight year old had surgery in Nov. of last year, and when she was diagnosed, I was sure the doctor and everyone else was lying to me, how could they take this thing in my child so casually?!! I know your concerns, after I ranted and raved, then got to this group and learned as much as possible I calmed down, learned to trust what my Dr. was telling me and then it all seemed to get better. Our doctor told us NO swimming until it was all resolved, which he did 2nd look last month and all was well, and now she is waiting for ear drum repair in other ear in Dec and then the doc told her she could swim by May of next summer. I think the reason he said to never swim, is that near as I can figure water is the enemy of Ctoma, makes it grow faster, so do not get even shower water in that ear. Use cotton balls saturated in vaseline in both ears when he showers or washes his hair. It really works. You will get more info when he goes back for post

op appointment, ASK QUESTIONS they sometimes do not volunteer the info you want, but will answer what you ask. I also think he did not have a cwd first time around. His ear will go down, my daughter thought hers was ruined for life, but now it is fine. Did they cut behind the ear itself? Her scar there is so minor it barely shows. Must remember, I hated her doctor the first time, now would not see anyone else! Dr. Mark Syms by the way, Phoenix, Arizona. I hope some of this is helpful to you, and once your anger/fear subsides, you will be ok, and so will he. By the way they took out hearing bones with the ctoma, then repaired it all when they went back in last month and she can hear fine now. Blessings from somewhere. Your son will be fine, and you will too, please don't worry.

shirleymomaAndy <aandbrown4@...> wrote:

Firstly I hope this message is approved by the group owner as my husband and I are totally confused/upset/angry/ and frustrated by what our 8 year old son has just gone through. had surgery on 31/8 for cholesteatoma, we assume it was the canal-wall-down procedure but haven't been able to speak to consultant since op. before the op we were told that would lead a normal life but last week a doctor told us that would only be able to go swimming if he kept his head above water and he wouldn't be able to jump in a pool, even a shower would be difficult !!!! Also his ear is sticking out - will this go back to normal over time ?? there are lots of things we would like to know and would like to ask, but i won't go on now, i just hope this message is approved as I'm sure this group could

help.-Marie, UK

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[Guest guest]

-Marie wrote :-

>

> Firstly I hope this message is approved by the group owner as my

> husband and I are totally confused/upset/angry/ and frustrated by what

> our 8 year old son has just gone through.

> had surgery on 31/8 for cholesteatoma, we assume it was the

> canal-wall-down procedure but haven't been able to speak to consultant

> since op. before the op we were told that would lead a normal

> life but last week a doctor told us that would only be able to

> go swimming if he kept his head above water and he wouldn't be able to

> jump in a pool, even a shower would be difficult !!!! Also his ear is

> sticking out - will this go back to normal over time ??

-Marie,

Ask away, that's what we're all here for. I can understand your

frustration ! Doctors often don't tell us everything - not in this country

anyway - unless we make it obvious that we're clued-up and understand what

they are talking about, otherwise they just tell us what they think we are

capable of taking in. Although my consultant explained things fairly well

to me, he never used the word Cholesteatoma - I only found that out by

looking up ear surgery sites on the web and working it out for myself !

Whatever else, you certainly need to find out exactly which procedure they

have done. Don't be afraid to ask the doctors questions, or to make up a

list of questions before you go in. The more informed you are, the more help

and support you will be able to give your son.

Don't worry about the sticking-out ear, that's quite normal after a c-toma

operation ! After my last operation I came out looking like Worzel Gummidge

(apologies to non-Brits here) but it soon settled down. By the time my

packing was taken out, the only way you could tell that I'd had the

operation was by looking at the scar - and that soon disappeared once my

hair grew back.

Regrettably, lots of us have had the " no water in the ear " advice, it goes

with the territory. I've been told that since I was five years old, and I

was never diagnosed with c-toma until I was nearly 50. However there are

ways to avoid getting water in the ear without missing out on life, as I'm

sure some of the other group members will be telling you over the coming

days.

,

Milton Keynes, UK

[Guest guest]

Has anyone on here obtained a special ear plug so that

no water gets in? The vaseline on cotton ball is not

doing it for me, just seems to melt in my ear feels

all gooey, and I have tried at least 8 different plugs

from different stores that just do not do it either.

The more I try to keep the water out in the shower, it

seems the more it comes in! Was just wondering if

anyone knows of a company or website that they tried

and it actually works, if not I will look around

online. Thanks and good luck to everyone!

--- <biffo1963@...> wrote:

> -Marie wrote :-

>

> >

> > Firstly I hope this message is approved by the

> group owner as my

> > husband and I are totally confused/upset/angry/

> and frustrated by what

> > our 8 year old son has just gone through.

> > had surgery on 31/8 for cholesteatoma, we

> assume it was the

> > canal-wall-down procedure but haven't been able to

> speak to consultant

> > since op. before the op we were told that

> would lead a normal

> > life but last week a doctor told us that

> would only be able to

> > go swimming if he kept his head above water and he

> wouldn't be able to

> > jump in a pool, even a shower would be difficult

> !!!! Also his ear is

> > sticking out - will this go back to normal over

> time ??

>

> -Marie,

>

> Ask away, that's what we're all here for. I can

> understand your

> frustration ! Doctors often don't tell us

> everything - not in this country

> anyway - unless we make it obvious that we're

> clued-up and understand what

> they are talking about, otherwise they just tell us

> what they think we are

> capable of taking in. Although my consultant

> explained things fairly well

> to me, he never used the word Cholesteatoma - I only

> found that out by

> looking up ear surgery sites on the web and working

> it out for myself !

>

> Whatever else, you certainly need to find out

> exactly which procedure they

> have done. Don't be afraid to ask the doctors

> questions, or to make up a

> list of questions before you go in. The more

> informed you are, the more help

> and support you will be able to give your son.

>

> Don't worry about the sticking-out ear, that's quite

> normal after a c-toma

> operation ! After my last operation I came out

> looking like Worzel Gummidge

> (apologies to non-Brits here) but it soon settled

> down. By the time my

> packing was taken out, the only way you could tell

> that I'd had the

> operation was by looking at the scar - and that soon

> disappeared once my

> hair grew back.

>

> Regrettably, lots of us have had the " no water in

> the ear " advice, it goes

> with the territory. I've been told that since I was

> five years old, and I

> was never diagnosed with c-toma until I was nearly

> 50. However there are

> ways to avoid getting water in the ear without

> missing out on life, as I'm

> sure some of the other group members will be telling

> you over the coming

> days.

>

>

>

> ,

> Milton Keynes, UK

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

I use cotton ball with vaseline, then 2 layers of shower cap.

When washing hair, the cotton ball plus 2 plastic cups (one big one small) and have head tilted to one side.

My ear plug failed too. nyn8tve <nyn8tve@...> wrote:

Has anyone on here obtained a special ear plug so thatno water gets in? The vaseline on cotton ball is notdoing it for me, just seems to melt in my ear feelsall gooey, and I have tried at least 8 different plugsfrom different stores that just do not do it either. The more I try to keep the water out in the shower, itseems the more it comes in! Was just wondering ifanyone knows of a company or website that they triedand it actually works, if not I will look aroundonline. Thanks and good luck to everyone!--- <biffo1963@...> wrote:> -Marie wrote :-> > >> > Firstly I hope this message is approved by the> group owner as my> > husband and I are totally confused/upset/angry/> and frustrated by what> > our 8 year old son

has just gone through.> > had surgery on 31/8 for cholesteatoma, we> assume it was the> > canal-wall-down procedure but haven't been able to> speak to consultant> > since op. before the op we were told that > would lead a normal> > life but last week a doctor told us that > would only be able to> > go swimming if he kept his head above water and he> wouldn't be able to> > jump in a pool, even a shower would be difficult> !!!! Also his ear is> > sticking out - will this go back to normal over> time ??> > -Marie,> > Ask away, that's what we're all here for. I can> understand your > frustration ! Doctors often don't tell us> everything - not in this country > anyway - unless we make it obvious that we're> clued-up and understand what > they

are talking about, otherwise they just tell us> what they think we are > capable of taking in. Although my consultant> explained things fairly well > to me, he never used the word Cholesteatoma - I only> found that out by > looking up ear surgery sites on the web and working> it out for myself !> > Whatever else, you certainly need to find out> exactly which procedure they > have done. Don't be afraid to ask the doctors> questions, or to make up a > list of questions before you go in. The more> informed you are, the more help > and support you will be able to give your son.> > Don't worry about the sticking-out ear, that's quite> normal after a c-toma > operation ! After my last operation I came out> looking like Worzel Gummidge > (apologies to non-Brits here) but it soon settled> down. By the time my

> packing was taken out, the only way you could tell> that I'd had the > operation was by looking at the scar - and that soon> disappeared once my > hair grew back.> > Regrettably, lots of us have had the "no water in> the ear" advice, it goes > with the territory. I've been told that since I was> five years old, and I > was never diagnosed with c-toma until I was nearly> 50. However there are > ways to avoid getting water in the ear without> missing out on life, as I'm > sure some of the other group members will be telling> you over the coming > days.> > > > ,> Milton Keynes, UK > > > __________________________________ - PC Magazine Editors' Choice 2005 http://mail.

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[Guest guest]

Thank you , I will try that.

--- wafi kumo <wafikumo@...> wrote:

> I use cotton ball with vaseline, then 2 layers of

> shower cap.

> When washing hair, the cotton ball plus 2 plastic

> cups (one big one small) and have head tilted to one

> side.

> My ear plug failed too.

>

> nyn8tve <nyn8tve@...> wrote:

> Has anyone on here obtained a special ear plug so

> that

> no water gets in? The vaseline on cotton ball is

> not

> doing it for me, just seems to melt in my ear feels

> all gooey, and I have tried at least 8 different

> plugs

> from different stores that just do not do it either.

>

> The more I try to keep the water out in the shower,

> it

> seems the more it comes in! Was just wondering if

> anyone knows of a company or website that they tried

> and it actually works, if not I will look around

> online. Thanks and good luck to everyone!

>

>

>

> --- <biffo1963@...> wrote:

>

> > -Marie wrote :-

> >

> > >

> > > Firstly I hope this message is approved by the

> > group owner as my

> > > husband and I are totally confused/upset/angry/

> > and frustrated by what

> > > our 8 year old son has just gone through.

> > > had surgery on 31/8 for cholesteatoma, we

> > assume it was the

> > > canal-wall-down procedure but haven't been able

> to

> > speak to consultant

> > > since op. before the op we were told that

>

> > would lead a normal

> > > life but last week a doctor told us that

> > would only be able to

> > > go swimming if he kept his head above water and

> he

> > wouldn't be able to

> > > jump in a pool, even a shower would be difficult

> > !!!! Also his ear is

> > > sticking out - will this go back to normal over

> > time ??

> >

> > -Marie,

> >

> > Ask away, that's what we're all here for. I can

> > understand your

> > frustration ! Doctors often don't tell us

> > everything - not in this country

> > anyway - unless we make it obvious that we're

> > clued-up and understand what

> > they are talking about, otherwise they just tell

> us

> > what they think we are

> > capable of taking in. Although my consultant

> > explained things fairly well

> > to me, he never used the word Cholesteatoma - I

> only

> > found that out by

> > looking up ear surgery sites on the web and

> working

> > it out for myself !

> >

> > Whatever else, you certainly need to find out

> > exactly which procedure they

> > have done. Don't be afraid to ask the doctors

> > questions, or to make up a

> > list of questions before you go in. The more

> > informed you are, the more help

> > and support you will be able to give your son.

> >

> > Don't worry about the sticking-out ear, that's

> quite

> > normal after a c-toma

> > operation ! After my last operation I came out

> > looking like Worzel Gummidge

> > (apologies to non-Brits here) but it soon settled

> > down. By the time my

> > packing was taken out, the only way you could tell

> > that I'd had the

> > operation was by looking at the scar - and that

> soon

> > disappeared once my

> > hair grew back.

> >

> > Regrettably, lots of us have had the " no water in

> > the ear " advice, it goes

> > with the territory. I've been told that since I

> was

> > five years old, and I

> > was never diagnosed with c-toma until I was nearly

> > 50. However there are

> > ways to avoid getting water in the ear without

> > missing out on life, as I'm

> > sure some of the other group members will be

> telling

> > you over the coming

> > days.

> >

> >

> >

> > ,

> > Milton Keynes, UK

> >

> >

> >

>

>

>

>

> __________________________________

> - PC Magazine Editors' Choice 2005

> http://mail.

>

>

>

[Guest guest]

Hi ,

u are welcome.

Also, after washing hair, or whenever water did slip into the ear, I use hairdryer in cool air mode, blow the ear for a while. I dont know if it works, just do it for peace of mind. Becareful not to blow too close to ear, need to take care of ear drum too.

Irene nyn8tve <nyn8tve@...> wrote:

Thank you , I will try that.--- wafi kumo <wafikumo@...> wrote:> I use cotton ball with vaseline, then 2 layers of> shower cap. > When washing hair, the cotton ball plus 2 plastic> cups (one big one small) and have head tilted to one> side. > My ear plug failed too. > > nyn8tve <nyn8tve@...> wrote:> Has anyone on here obtained a special ear plug so> that> no water gets in? The vaseline on cotton ball is> not> doing it for me, just seems to melt in my ear feels> all gooey, and I have tried at least 8 different> plugs> from different stores that just do not do it either.> > The more I try to keep the water out in the shower,> it> seems the more it comes in! Was just wondering if> anyone

knows of a company or website that they tried> and it actually works, if not I will look around> online. Thanks and good luck to everyone!> > > > --- <biffo1963@...> wrote:> > > -Marie wrote :-> > > > >> > > Firstly I hope this message is approved by the> > group owner as my> > > husband and I are totally confused/upset/angry/> > and frustrated by what> > > our 8 year old son has just gone through.> > > had surgery on 31/8 for cholesteatoma, we> > assume it was the> > > canal-wall-down procedure but haven't been able> to> > speak to consultant> > > since op. before the op we were told that> > > would lead a normal> > > life but last week a doctor told us that > > would only be able

to> > > go swimming if he kept his head above water and> he> > wouldn't be able to> > > jump in a pool, even a shower would be difficult> > !!!! Also his ear is> > > sticking out - will this go back to normal over> > time ??> > > > -Marie,> > > > Ask away, that's what we're all here for. I can> > understand your > > frustration ! Doctors often don't tell us> > everything - not in this country > > anyway - unless we make it obvious that we're> > clued-up and understand what > > they are talking about, otherwise they just tell> us> > what they think we are > > capable of taking in. Although my consultant> > explained things fairly well > > to me, he never used the word Cholesteatoma - I> only> > found that out

by > > looking up ear surgery sites on the web and> working> > it out for myself !> > > > Whatever else, you certainly need to find out> > exactly which procedure they > > have done. Don't be afraid to ask the doctors> > questions, or to make up a > > list of questions before you go in. The more> > informed you are, the more help > > and support you will be able to give your son.> > > > Don't worry about the sticking-out ear, that's> quite> > normal after a c-toma > > operation ! After my last operation I came out> > looking like Worzel Gummidge > > (apologies to non-Brits here) but it soon settled> > down. By the time my > > packing was taken out, the only way you could tell> > that I'd had the > > operation was by looking at the scar - and that>

soon> > disappeared once my > > hair grew back.> > > > Regrettably, lots of us have had the "no water in> > the ear" advice, it goes > > with the territory. I've been told that since I> was> > five years old, and I > > was never diagnosed with c-toma until I was nearly> > 50. However there are > > ways to avoid getting water in the ear without> > missing out on life, as I'm > > sure some of the other group members will be> telling> > you over the coming > > days.> > > > > > > > ,> > Milton Keynes, UK > > > > > > > > > > > __________________________________ > - PC Magazine Editors' Choice 2005 > http://mail.> > >