RE: My 5 year old son has just been diagnosed with cholesteatoma-

[Guest guest]

Hi, Natalyn.

Welcome to the group! Kudos to you for being persistant. This disease often goes undiagnosed for years (as you already know) and most people are unaware of the seriousness of ctoma. With regards to hospitals, where do you live? This group is widely spread out all over the world, so if you need recommendations, this is the place to come!

My son was 3 when he was first diagnosed, so I know exactly what you're going through. Finding an experienced doctor is crucial, most notably, an otologist (one who specializes in diseases of the ear). The doctor should perform at least two or three "cholesteatoma" surgeries a week. If you have any doubts about the doctor, please get a second opinion (we did in Troy's case and are glad we did!). When it comes time for surgery, no doctor can be 100% accurate as to the timeframe. The cat scan only shows a portion of the ctoma and he/she will only know the extent once in surgery. Troy's surgery was supposed to last between 3-4 hours -- 6 1/2 hours later he was done.

This is a very scary time for you and what you might not realize now is how amazing your son will be through this entire oreal. Kids are resilient and you will be surprised at how fast your son will recover. The day after my son's surgery, he was bouncing off the walls! So, to make a long story short, keep a positive outlook, and give yourself a pat on the back for trusting your instincts!

Take care and please keep us posted.

God bless,

Terri (mom of Troy -- age 9)

-----Original Message-----From: natalyn12 <natalyn@...> [mailto:natalyn@...]Sent: Tuesday, February 04, 2003 10:13 AMcholesteatoma Subject: My 5 year old son has just been diagnosed with cholesteatoma-My 5 year old son has just been diagnosed with cholesteatoma- he has had it since birth and does not have the commom effects of cholesteatoma ( lots of ear infections, hole in the ear, not intact ear drum, fluid & odor from the ear). I happen to keep insisting on further appointments and answers because they had no explanation for his 28% hearing loss in one ear. They did a cat scan last week and diagnosed him with cholesteatoma. My husband and I are meeting with the doctor on Feb. 11, 2003. Any suggestions on the questions I should ask- or do you know what hospitals would be best (what hospitals perform the most of these type of surgeries) in the mid west area.I am very concerned and nervous! Please help!Natalyn Marlaire

[Guest guest]

Natalyn,

My 6 year old son was just diagnosed with C toma also. He had no symptoms, we found out because he failed his 1st grade hearing test (30-40% hearing loss in right ear), went to Ped doctor then to ENT who didn't know what was wrong but wanted to take a wait and see attitude. We had to push for a CT scan which showed the c toma. We saw the doctor who does the surgery on 1/27. He really put us at ease. Here are some questions that we asked (based on the suggestions from everyone on this site)

How long will child miss school? Physical activity limits? Ask about swimming / washing hair

How long do you expect surgery to last? Stay or go home after?

Does this doctor use a face monitor?

How often do you perform this procedure? What is your success rate with this surgical procedure? Are there any other surgeons in the area or surrounding areas with more experience? What is the usual recovery? What's the worst complication you've ever seen? Are you available after hours if needed? May I have a list of patients who have had the operation?

We are now waiting for a surgery date, we hope to get in soon. Tony is just now figuring out what it all means and is scared about surgery. We are trying to tell him as little as possible until we have the date, I don't want him to worry longer than he has to. Our ordeal started in Sept. 02 and without this group I don't know where we'd be. We get the best info from here. Even our doctor was impressed.

Good Luck

Sandi

(mom of Tony)

My 5 year old son has just been diagnosed with cholesteatoma-

My 5 year old son has just been diagnosed with cholesteatoma- he has had it since birth and does not have the commom effects of cholesteatoma ( lots of ear infections, hole in the ear, not intact ear drum, fluid & odor from the ear). I happen to keep insisting on further appointments and answers because they had no explanation for his 28% hearing loss in one ear. They did a cat scan last week and diagnosed him with cholesteatoma. My husband and I are meeting with the doctor on Feb. 11, 2003. Any suggestions on the questions I should ask- or do you know what hospitals would be best (what hospitals perform the most of these type of surgeries) in the mid west area.I am very concerned and nervous! Please help!Natalyn Marlaire

[Guest guest]

Hi Sandi

Thank you so much for getting back to

me. We are just so frightened about this

whole thing- and it just kills me knowing that my son has to deal with this

situation. I will definitely take this

email with me to the doctor on the 2/11- I am so grateful for your support and

advice.

I hope everything goes well with Tony- you

will be in my thoughts and prayers.

Natalyn

Re: My 5

year old son has just been diagnosed with cholesteatoma-

Natalyn,

My 6 year old son was just diagnosed

with C toma also. He had no symptoms, we found out because he failed his 1st

grade hearing test (30-40% hearing loss in right ear), went to Ped doctor then

to ENT who didn't know what was wrong but wanted to take a wait and see

attitude. We had to push for a CT scan which showed the c toma. We saw the

doctor who does the surgery on 1/27. He really put us at ease. Here are some

questions that we asked (based on the suggestions from everyone on this site)

How long will child miss school?

Physical activity limits? Ask about swimming / washing hair

How long do you expect surgery to

last? Stay or go home after?

Does this doctor use a face monitor?

How often do you perform this

procedure?

What is your success rate with this surgical procedure?

Are there any other surgeons in the area or surrounding areas with more

experience?

What is the usual recovery?

What's the worst complication you've ever seen?

Are you available after hours if needed?

May I have a list of patients who have had the operation?

We are now waiting for a surgery

date, we hope to get in soon. Tony is just now figuring out what it all means

and is scared about surgery. We are trying to tell him as little as possible

until we have the date, I don't want him to worry longer than he has to. Our

ordeal started in Sept. 02 and without this group I don't know where we'd

be. We get the best info from here. Even our doctor was impressed.

Good Luck

Sandi

(mom of Tony)

My 5 year old son has just been diagnosed with cholesteatoma-

My 5 year old son has just been diagnosed with

cholesteatoma- he has

had it since birth and does not have the commom

effects of

cholesteatoma ( lots of ear infections, hole in

the ear, not intact

ear drum, fluid & odor from the ear). I

happen to keep insisting on

further appointments and answers because they had

no explanation for

his 28% hearing loss in one ear. They did a

cat scan last week and

diagnosed him with cholesteatoma. My husband

and I are meeting with

the doctor on Feb. 11, 2003. Any suggestions

on the questions I

should ask- or do you know what hospitals would be

best (what

hospitals perform the most of these type of

surgeries) in the mid

west area.

I am very concerned and nervous! Please

help!

Natalyn Marlaire

This

Cholesteatoma support group offers and provides information of a general nature

about cholesteatoma as well as members personal experiences with this disease.

The information provided is not intended to replace surgical or medical advice

or recommendations. Any information in the messages, postings or articles on

the web site should not be considered a substitute for consultation with a

medical professional to address individual medical needs. Individuals'

particular facts and circumstances will determine the treatment which is most

appropriate.

[Guest guest]

Hi Terri

We live in Eau , Wisconsin-

recommend any specific hospitals around here?

My 5 year

old son has just been diagnosed with cholesteatoma-

My 5 year old son has just been diagnosed with

cholesteatoma- he has

had it since birth and does not have the commom

effects of

cholesteatoma ( lots of ear infections, hole in

the ear, not intact

ear drum, fluid & odor from the ear). I

happen to keep insisting on

further appointments and answers because they had

no explanation for

his 28% hearing loss in one ear. They did a

cat scan last week and

diagnosed him with cholesteatoma. My husband

and I are meeting with

the doctor on Feb. 11, 2003. Any suggestions

on the questions I

should ask- or do you know what hospitals would be

best (what

hospitals perform the most of these type of

surgeries) in the mid

west area.

I am very concerned and nervous! Please

help!

Natalyn Marlaire

This

Cholesteatoma support group offers and provides information of a general nature

about cholesteatoma as well as members personal experiences with this disease.

The information provided is not intended to replace surgical or medical advice

or recommendations. Any information in the messages, postings or articles on

the web site should not be considered a substitute for consultation with a

medical professional to address individual medical needs. Individuals'

particular facts and circumstances will determine the treatment which is most

appropriate.

[Guest guest]

Re: My 5

year old son has just been diagnosed with cholesteatoma-

Natalyn,

My 6 year old son was just diagnosed

with C toma also. He had no symptoms, we found out because he failed his 1st

grade hearing test (30-40% hearing loss in right ear), went to Ped doctor then

to ENT who didn't know what was wrong but wanted to take a wait and see

attitude. We had to push for a CT scan which showed the c toma. We saw the doctor

who does the surgery on 1/27. He really put us at ease. Here are some questions

that we asked (based on the suggestions from everyone on this site)

How long will child miss school?

Physical activity limits? Ask about swimming / washing hair

How long do you expect surgery to

last? Stay or go home after?

Does this doctor use a face monitor?

How often do you perform this

procedure?

What is your success rate with this surgical procedure?

Are there any other surgeons in the area or surrounding areas with more

experience?

What is the usual recovery?

What's the worst complication you've ever seen?

Are you available after hours if needed?

May I have a list of patients who have had the operation?

We are now waiting for a surgery

date, we hope to get in soon. Tony is just now figuring out what it all means

and is scared about surgery. We are trying to tell him as little as possible

until we have the date, I don't want him to worry longer than he has to. Our

ordeal started in Sept. 02 and without this group I don't know where we'd

be. We get the best info from here. Even our doctor was impressed.

Good Luck

Sandi

(mom of Tony)

My 5 year old son has just been diagnosed with cholesteatoma-

My 5 year old son has just been diagnosed with

cholesteatoma- he has

had it since birth and does not have the commom

effects of

cholesteatoma ( lots of ear infections, hole in

the ear, not intact

ear drum, fluid & odor from the ear). I

happen to keep insisting on

further appointments and answers because they had

no explanation for

his 28% hearing loss in one ear. They did a

cat scan last week and

diagnosed him with cholesteatoma. My husband

and I are meeting with

the doctor on Feb. 11, 2003. Any suggestions

on the questions I

should ask- or do you know what hospitals would be

best (what

hospitals perform the most of these type of

surgeries) in the mid

west area.

I am very concerned and nervous! Please

help!

Natalyn Marlaire

This

Cholesteatoma support group offers and provides information of a general nature

about cholesteatoma as well as members personal experiences with this disease.

The information provided is not intended to replace surgical or medical advice

or recommendations. Any information in the messages, postings or articles on

the web site should not be considered a substitute for consultation with a

medical professional to address individual medical needs. Individuals'

particular facts and circumstances will determine the treatment which is most

appropriate.

[Guest guest]

My 5 year

old son has just been diagnosed with cholesteatoma-

My 5 year old son has just been diagnosed with

cholesteatoma- he has

had it since birth and does not have the commom

effects of

cholesteatoma ( lots of ear infections, hole in

the ear, not intact

ear drum, fluid & odor from the ear). I

happen to keep insisting on

further appointments and answers because they had

no explanation for

his 28% hearing loss in one ear. They did a

cat scan last week and

diagnosed him with cholesteatoma. My husband

and I are meeting with

the doctor on Feb. 11, 2003. Any suggestions

on the questions I

should ask- or do you know what hospitals would be

best (what

hospitals perform the most of these type of

surgeries) in the mid

west area.

I am very concerned and nervous! Please

help!

Natalyn Marlaire

This

Cholesteatoma support group offers and provides information of a general nature

about cholesteatoma as well as members personal experiences with this disease.

The information provided is not intended to replace surgical or medical advice

or recommendations. Any information in the messages, postings or articles on

the web site should not be considered a substitute for consultation with a

medical professional to address individual medical needs. Individuals'

particular facts and circumstances will determine the treatment which is most

appropriate.

[Guest guest]

Sorry I can't help you, Natalyn (I'm from northern Virginia). Anyone out there from Wisconsin?

-----Original Message-----From: Natalyn Marlaire [mailto:natalyn@...]Sent: Tuesday, February 04, 2003 3:45 PMcholesteatoma Subject: RE: My 5 year old son has just been diagnosed with cholesteatoma-

Hi Terri

We live in Eau , Wisconsin- recommend any specific hospitals around here?

-----Original Message-----From: Terri Potts [mailto:tpotts@...] Sent: Tuesday, February 04, 2003 11:46 AMcholesteatoma Subject: RE: My 5 year old son has just been diagnosed with cholesteatoma-

Hi, Natalyn.

Welcome to the group! Kudos to you for being persistant. This disease often goes undiagnosed for years (as you already know) and most people are unaware of the seriousness of ctoma. With regards to hospitals, where do you live? This group is widely spread out all over the world, so if you need recommendations, this is the place to come!

My son was 3 when he was first diagnosed, so I know exactly what you're going through. Finding an experienced doctor is crucial, most notably, an otologist (one who specializes in diseases of the ear). The doctor should perform at least two or three "cholesteatoma" surgeries a week. If you have any doubts about the doctor, please get a second opinion (we did in Troy's case and are glad we did!). When it comes time for surgery, no doctor can be 100% accurate as to the timeframe. The cat scan only shows a portion of the ctoma and he/she will only know the extent once in surgery. Troy's surgery was supposed to last between 3-4 hours -- 6 1/2 hours later he was done.

This is a very scary time for you and what you might not realize now is how amazing your son will be through this entire oreal. Kids are resilient and you will be surprised at how fast your son will recover. The day after my son's surgery, he was bouncing off the walls! So, to make a long story short, keep a positive outlook, and give yourself a pat on the back for trusting your instincts!

Take care and please keep us posted.

God bless,

Terri (mom of Troy -- age 9)

-----Original Message-----From: natalyn12 <natalyn@...> [mailto:natalyn@...]Sent: Tuesday, February 04, 2003 10:13 AMcholesteatoma Subject: My 5 year old son has just been diagnosed with cholesteatoma-

My 5 year old son has just been diagnosed with cholesteatoma- he has had it since birth and does not have the commom effects of cholesteatoma ( lots of ear infections, hole in the ear, not intact ear drum, fluid & odor from the ear). I happen to keep insisting on further appointments and answers because they had no explanation for his 28% hearing loss in one ear. They did a cat scan last week and diagnosed him with cholesteatoma. My husband and I are meeting with the doctor on Feb. 11, 2003. Any suggestions on the questions I should ask- or do you know what hospitals would be best (what hospitals perform the most of these type of surgeries) in the mid west area.I am very concerned and nervous! Please help!Natalyn Marlaire

[Guest guest]

Natalyn,

I've found this group to be very helpful. Even though we are now in the waiting mode, waiting for surgery to be scheduled, I still read the postings everyday and I learn something everyday and I print out a lot of the postings and have a HUGE file so that I can ask our doctor more questions. Keep me posted on your son, it's scary but the sooner you get it taken care of the better. I know this is much harder on me than my son, he is barely aware of whats going on since he has no pain in his ear he can't see what the fuss is about. I'll be thinking about you next Tuesday but don't worry 'cause it'll be fine.

Sandi

(mom of Tony)

My 5 year old son has just been diagnosed with cholesteatoma-

My 5 year old son has just been diagnosed with cholesteatoma- he has had it since birth and does not have the commom effects of cholesteatoma ( lots of ear infections, hole in the ear, not intact ear drum, fluid & odor from the ear). I happen to keep insisting on further appointments and answers because they had no explanation for his 28% hearing loss in one ear. They did a cat scan last week and diagnosed him with cholesteatoma. My husband and I are meeting with the doctor on Feb. 11, 2003. Any suggestions on the questions I should ask- or do you know what hospitals would be best (what hospitals perform the most of these type of surgeries) in the mid west area.I am very concerned and nervous! Please help!Natalyn Marlaire