RE: 8yr old daughter with Cholesteatoma

[Guest guest]

Hi Shannen

Ctoma is no respecter of age. It's very hard to know what the prognosis might be - many people diagnosed with ctoma post on this site and for them it's dealt with and we don't hear from them again. For other people it's an ongoing and maybe lifelong battle. A lot of the longterm fallout of ctoma is due to the severity of the initial condition. Advanced ctoma shows up with severe symptoms which may not always be reversible - these include things like deafness, vertigo, face paralysis, headaches and much more. If your daughter isn't showing those kind of symptoms then I don't think you necessarily need to assume that she is going to have endless difficulties with this disease. Apart from symptoms, the doctors will probably not know the extent of the disease until they operate. That's the uncertainty, ctoma doesn't just come in one big clump but bits of it can spread around and hide in various places.

Ctoma is not hereditary either. In most cases, it's one of many middle ear conditions that start with poorly functioning Eustachian tubes. Eustachian tubes join the middle ear to the back of throat and open occasionally to relieve pressure and fluid in the ear. If they don't work properly then you get problems - that's what the grommets are there to combat. Children (some more than others) are particularly prone to ear infections because their E-tubes aren't properly formed. Most of them grow out of these problems as their heads grow to adult size. Not all of them of course, some will continue to have ear problems, including ctoma throughout adult life - as many of us here will testify.

I'm not sure what you mean by "opening the walls". You may be referring to stenosis which is a state where the ear and mostly the ear canal closes up i.e. the ear walls get thicker. I remember having this condition throughout childhood. It's thought that ear closes up because it's acting like a wound due to repeated infection. It's also a condition that surfers often encounter because they get a lot of cold water in their ears.

The risks with this surgery are extremely rare - all the bad stuff comes from the damage that the ctoma does. Post op recovery usually means some dizziness, tiredness, discharge and bleeding and maybe a temporary loss of taste. But children are very resilient and seem to recover a lot faster than the grown-ups do.

Phil

Hey there all, My daughter was diagnosed with c-toma. My mum is who posted already on this site re this. I am quite concerned myself about the effects this will have on my daughter. The ENT that I saw recently said that the grommets (inserted to help her hearing as she only had 15% hearing in her left ear) that the grommets she has might help to open the walls?She does have to go back and be reviewed in three months and an operation set at that time. I am worried cause I don't know to much and the ENT said that he will let me know more in three months. I am not wanting to wait that long and want to know if anyone has had any complications with their op? Mainly after.I want to know if this is a heredity thing? or how something like this can happen to someone so young. Anything that anyone can tell me about this would be greatly appreciated.. no matter how scary.. I am preparing myself for the worse. My mum is fantastic and has forwarded a few things on to me... but would like to know more... no such thing as too much information... Look forward to hearing from you all soonShannen very scared mummy

[Guest guest]

Hey there Phil, How you doing???

You certainly know your stuff, thanks for the insight. Was greatly appreciated.

I think the more information I can gather, the better. I am pretty much scared mainly because I do not know how bad it is and not knowing to much about the process's.

I am a young single mum (27) and when things happen that I don't know too much about I worry. I actually work in a hearing centre, but we basically prescribe hearing aids for clients with a hearing loss. We do not deal with ear probs the way the ENT's do. So I was quite suprised that I didn't even know what a c-toma was. But I am now getting to know more.

I am glad that I have people that I can get information from as I am sure my mum has been.

I want to thank you for your insight as it was very informative.

Shannen

PS still very worried. Phil <psmorris@...> wrote:

Hi Shannen

Ctoma is no respecter of age. It's very hard to know what the prognosis might be - many people diagnosed with ctoma post on this site and for them it's dealt with and we don't hear from them again. For other people it's an ongoing and maybe lifelong battle. A lot of the longterm fallout of ctoma is due to the severity of the initial condition. Advanced ctoma shows up with severe symptoms which may not always be reversible - these include things like deafness, vertigo, face paralysis, headaches and much more. If your daughter isn't showing those kind of symptoms then I don't think you necessarily need to assume that she is going to have endless difficulties with this disease. Apart from symptoms, the doctors will probably not know the extent of the disease until they operate. That's the uncertainty, ctoma doesn't just come in one big clump but bits of it can spread around and hide in various

places.

Ctoma is not hereditary either. In most cases, it's one of many middle ear conditions that start with poorly functioning Eustachian tubes. Eustachian tubes join the middle ear to the back of throat and open occasionally to relieve pressure and fluid in the ear. If they don't work properly then you get problems - that's what the grommets are there to combat. Children (some more than others) are particularly prone to ear infections because their E-tubes aren't properly formed. Most of them grow out of these problems as their heads grow to adult size. Not all of them of course, some will continue to have ear problems, including ctoma throughout adult life - as many of us here will testify.

I'm not sure what you mean by "opening the walls". You may be referring to stenosis which is a state where the ear and mostly the ear canal closes up i.e. the ear walls get thicker. I remember having this condition throughout childhood. It's thought that ear closes up because it's acting like a wound due to repeated infection. It's also a condition that surfers often encounter because they get a lot of cold water in their ears.

The risks with this surgery are extremely rare - all the bad stuff comes from the damage that the ctoma does. Post op recovery usually means some dizziness, tiredness, discharge and bleeding and maybe a temporary loss of taste. But children are very resilient and seem to recover a lot faster than the grown-ups do.

Phil

Hey there all, My daughter was diagnosed with c-toma. My mum is who posted already on this site re this. I am quite concerned myself about the effects this will have on my daughter. The ENT that I saw recently said that the grommets (inserted to help her hearing as she only had 15% hearing in her left ear) that the grommets she has might help to open the walls?She does have to go back and be reviewed in three months and an operation set at that time. I am worried cause I don't know to much and the ENT said that he will let me know more in three months. I am not wanting to wait that long and want to know if anyone has had any complications with their op? Mainly after.I want to know if this is a heredity thing? or how something like this can happen to someone so young.

Anything that anyone can tell me about this would be greatly appreciated.. no matter how scary.. I am preparing myself for the worse. My mum is fantastic and has forwarded a few things on to me... but would like to know more... no such thing as too much information... Look forward to hearing from you all soonShannen very scared mummy

[Guest guest]

Phil,

Please define "grommet" Do you mean ear tubes??

Many thanks,

-----Original Message-----From: 2 Hot 4 U [mailto:hsvbabe77@...]Sent: Sunday, August 01, 2004 8:53 PMcholesteatoma Subject: Re: 8yr old daughter with Cholesteatoma

Hey there Phil, How you doing???

You certainly know your stuff, thanks for the insight. Was greatly appreciated.

I think the more information I can gather, the better. I am pretty much scared mainly because I do not know how bad it is and not knowing to much about the process's.

I am a young single mum (27) and when things happen that I don't know too much about I worry. I actually work in a hearing centre, but we basically prescribe hearing aids for clients with a hearing loss. We do not deal with ear probs the way the ENT's do. So I was quite suprised that I didn't even know what a c-toma was. But I am now getting to know more.

I am glad that I have people that I can get information from as I am sure my mum has been.

I want to thank you for your insight as it was very informative.

Shannen

PS still very worried. Phil <psmorris@...> wrote:

Hi Shannen

Ctoma is no respecter of age. It's very hard to know what the prognosis might be - many people diagnosed with ctoma post on this site and for them it's dealt with and we don't hear from them again. For other people it's an ongoing and maybe lifelong battle. A lot of the longterm fallout of ctoma is due to the severity of the initial condition. Advanced ctoma shows up with severe symptoms which may not always be reversible - these include things like deafness, vertigo, face paralysis, headaches and much more. If your daughter isn't showing those kind of symptoms then I don't think you necessarily need to assume that she is going to have endless difficulties with this disease. Apart from symptoms, the doctors will probably not know the extent of the disease until they operate. That's the uncertainty, ctoma doesn't just come in one big clump but bits of it can spread around and hide in various places.

Ctoma is not hereditary either. In most cases, it's one of many middle ear conditions that start with poorly functioning Eustachian tubes. Eustachian tubes join the middle ear to the back of throat and open occasionally to relieve pressure and fluid in the ear. If they don't work properly then you get problems - that's what the grommets are there to combat. Children (some more than others) are particularly prone to ear infections because their E-tubes aren't properly formed. Most of them grow out of these problems as their heads grow to adult size. Not all of them of course, some will continue to have ear problems, including ctoma throughout adult life - as many of us here will testify.

I'm not sure what you mean by "opening the walls". You may be referring to stenosis which is a state where the ear and mostly the ear canal closes up i.e. the ear walls get thicker. I remember having this condition throughout childhood. It's thought that ear closes up because it's acting like a wound due to repeated infection. It's also a condition that surfers often encounter because they get a lot of cold water in their ears.

The risks with this surgery are extremely rare - all the bad stuff comes from the damage that the ctoma does. Post op recovery usually means some dizziness, tiredness, discharge and bleeding and maybe a temporary loss of taste. But children are very resilient and seem to recover a lot faster than the grown-ups do.

Phil

Hey there all, My daughter was diagnosed with c-toma. My mum is who posted already on this site re this. I am quite concerned myself about the effects this will have on my daughter. The ENT that I saw recently said that the grommets (inserted to help her hearing as she only had 15% hearing in her left ear) that the grommets she has might help to open the walls?She does have to go back and be reviewed in three months and an operation set at that time. I am worried cause I don't know to much and the ENT said that he will let me know more in three months. I am not wanting to wait that long and want to know if anyone has had any complications with their op? Mainly after.I want to know if this is a heredity thing? or how something like this can happen to someone so young. Anything that anyone can tell me about this would be greatly appreciated.. no matter how scary.. I am preparing myself for the worse. My mum is fantastic and has forwarded a few things on to me... but would like to know more... no such thing as too much information... Look forward to hearing from you all soonShannen very scared mummy

[Guest guest]

Please define " grommet " Do you mean ear tubes??

Hi

That's right! Shannen is in Australia and I'm in the UK, and in both of

those places 'grommets' is the usual term for ear tubes. Another reminder

that we all 'nearly' speak the same language.

Phil .

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