new to group, just need support and help

[Guest guest]

Hi everyone...

My daughter who will be 6 in November was just diagnosed with having a

cholesteatoma in

her right ear as of last Wednesday. She had surgery to have a tube put in her

left ear (which

is her " normal " ear during the surgery) and a polyp removed from her right. The

ENT felt he

was not able to help her so he sent us to a specialist who deals with c-tomas

and we saw him

today. He wants to do surgery on her on the 27th of this month. Apparently

hers sticks out

into her middle ear and into her mastoid region. It has degraded her hearing

bones and he

thinks he will have to rebuild them at a later date... he told me we are looking

at 2 surgeries

for this.

I guess my thoughts/ questions are, how many of you were diagnosed with this as

kids and it

came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I

guess I am

using the right term, I am new at this, sorry...) so he is not sure of how much

she will get

back. I am just not sure of what to expect. And he said the probability of

this coming back is

high so she has to be monitored closely for a very long time.

Any help would be appreciated. I pretty much feel like a crappy mom because of

this (even

though I know it isn't my fault...)

[Guest guest]

As I have posted previously, I dealt with c-toma for most of my early childhood (everything was 'fixed' by the time I was 10 and I just went back several times a year for maintenance visits)

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her " normal " ear during the surgery) and a polyp removed from her right. The ENT felt he

was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he

thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am

using the right term, I am new at this, sorry...) so he is not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time.

Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...) -- })i({ Melinda Kaye Spille })i({

Very Proud Wife of Captain " Big Al " Super Blessed Mommy of Trinity, Emelia & TreyRomans 8:28, Ephesians 3:20(\__/) (='.'=) ( " )_( " )

[Guest guest]

My son is 7. Last year his C-toma was found on THanksgiving break. Within 2 weeks he was in the operating room. His ENT had let his go for a long time. He saw him for years and this doc actually put in 4 sets of tubes and a reconstrcution on his left ear and never found his c-toma. After he had lost about 80 % of his hearing we took him to a differnet doc. This was after Years of not getting anywhere. Within 5 minutes of seeing my son his new doc found what he believed to be a c-toma. He went out of the room and immediately called in a specialist, she has been a god-sent. After his ct scan she prepared us for a lifelong battle with this c-toma. His c-toma, we learned after 1st surgery, had eaten all his hearing bones, eroded his ear drum, and done tissue and nerve damage. However it had not done any damage to his main facial nerve, thank god. After this

operation she told us that in 6-12 months she would go back in remove any re-growth and put in prostheic bones. After that it could take mutiple surgeries to get those prostheics in the correct position to allow his hearing to come back. By the grace of god he went into surgery in July and was c-toma free. She cleared out scar tissue and put in his prosthesis. At his 1 month check up he had gone from not hearing anything to 60 %. After removing the c-toma he had no hearing, the doctor said the actual c-toma was acting as a hearing conductor and it was responsible for what little hearing he had left in that ear. He has now been ear infection free since his 1st operation. We thank god everyday that we found his new doc. She saved him. Be prepared that the surgery, especially the first, is scary and tough. But with the right doc, they can perform miracles.

From: Pamela Waling <pamcrt2002@...>Subject: new to group, just need support and helpcholesteatoma Date: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is

not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

Hi Athena,

I am curious. Did you use a Children's Hospital? Where was your best success? We live near Cincinnati, Ohio and have used their doctors, but are considering someone else thanks to a new c-toma friend from this site. My daughter's doctor has never mentioned replacing bones. I realize every day I have much more to learn!

new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is

not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

I am thankful that we have an awesome doctor. He is a specialist in the field

and took time to talk with me and Masie about this yesterday, but really, how

prepared can you be until you're knee deep in the poo right? I stumbled upon

this support group last night and figured this would be the best way to fill in

those missing links of playing that question and answer game. Masie is such a

good and smart little girl, I just feel horrible for her BECAUSE it is a scary

and tough thing. She doesn't fully understand what is going on and I am not

sure whether it is better to keep her slightly in the dark about it or answer

all her questions completely.

The original ENT we went to did not hesitate in the least to say he was no

trained to deal with this. He knew what it was but he wasn't going to attempt

to remove it. I thank God that he was smart enough to know his limitations as a

doctor and that we were able to immediately get in to see someone else. So now

it is just a waiting game until the 27th... thanks again for all the support,

this seems to be like a wonderful place for support.

Pamela Waling " smile, it confuses people... "

>

> From: Pamela Waling <pamcrt2002@...>

> Subject: new to group, just need support

> and help

> cholesteatoma

> Date: Tuesday, October 14, 2008, 9:12 PM

>

>

>

>

>

>

> Hi everyone...

>

> My daughter who will be 6 in November was just diagnosed

> with having a cholesteatoma in

> her right ear as of last Wednesday. She had surgery to have

> a tube put in her left ear (which

> is her " normal " ear during the surgery) and a

> polyp removed from her right. The ENT felt he

> was not able to help her so he sent us to a specialist who

> deals with c-tomas and we saw him

> today. He wants to do surgery on her on the 27th of this

> month. Apparently hers sticks out

> into her middle ear and into her mastoid region. It has

> degraded her hearing bones and he

> thinks he will have to rebuild them at a later date... he

> told me we are looking at 2 surgeries

> for this.

>

> I guess my thoughts/ questions are, how many of you were

> diagnosed with this as kids and it

> came back as teens/ adults? She does have SIGNIFICANT

> hearing loss, like 80% (I guess I am

> using the right term, I am new at this, sorry...) so he is

> not sure of how much she will get

> back. I am just not sure of what to expect. And he said the

> probability of this coming back is

> high so she has to be monitored closely for a very long

> time.

>

> Any help would be appreciated. I pretty much feel like a

> crappy mom because of this (even

> though I know it isn't my fault...)

[Guest guest]

Thank you for the thoughts and prayers. After reading all the many responses I

have received from people, I feel so blessed to have found such a great site. I

have almost cried reading responses from everyone, just knowing in my head not

to feel guilty about this and then reading everyone's responses... just makes it

easier to " accept " it not really being my fault. I truly hope Masie does not

have to deal with this 'for the rest of her life', as some people said they have

had to... I know in reality that she faces many difficulties with this disease

and many trials that we will have to deal with, but I am praying for total and

complete healing for my daughter... I truly accept nothing less.

I just am thankful that we caught this as early as we have and that we have such

a wonderful doctor on our side.

Thanks again for all of the support, I feel as though I am going to need it in

the near future...

Pam

Pamela Waling " smile, it confuses people... "

> From: Melinda Spille <melindakaye@...>

> Subject: Re: new to group, just need support and help

> cholesteatoma

> Date: Wednesday, October 15, 2008, 10:01 AM

> As I have posted previously, I dealt with c-toma for most of

> my early

> childhood (everything was 'fixed' by the time I was

> 10 and I just went back

> several times a year for maintenance visits)

>

> > Hi everyone...

> >

> > My daughter who will be 6 in November was just

> diagnosed with having a

> > cholesteatoma in

> > her right ear as of last Wednesday. She had surgery to

> have a tube put in

> > her left ear (which

> > is her " normal " ear during the surgery) and

> a polyp removed from her right.

> > The ENT felt he

> > was not able to help her so he sent us to a specialist

> who deals with

> > c-tomas and we saw him

> > today. He wants to do surgery on her on the 27th of

> this month. Apparently

> > hers sticks out

> > into her middle ear and into her mastoid region. It

> has degraded her

> > hearing bones and he

> > thinks he will have to rebuild them at a later date...

> he told me we are

> > looking at 2 surgeries

> > for this.

> >

> > I guess my thoughts/ questions are, how many of you

> were diagnosed with

> > this as kids and it

> > came back as teens/ adults? She does have SIGNIFICANT

> hearing loss, like

> > 80% (I guess I am

> > using the right term, I am new at this, sorry...) so

> he is not sure of how

> > much she will get

> > back. I am just not sure of what to expect. And he

> said the probability of

> > this coming back is

> > high so she has to be monitored closely for a very

> long time.

> >

> > Any help would be appreciated. I pretty much feel like

> a crappy mom because

> > of this (even

> > though I know it isn't my fault...)

> >

> >

> >

>

>

>

> --

> })i({ Melinda Kaye Spille })i({

> Very Proud Wife of Captain " Big Al "

> Super Blessed Mommy of Trinity, Emelia & Trey

> Romans 8:28, Ephesians 3:20

> (\__/)

> (='.'=)

> ( " )_( " )

[Guest guest]

We use Dauphin West Surgical Center in Mobile. AL. My son's doctor's name is Elliott. We currently live about 5 1/2 hours away but we don't mind because we know how good they are for my son. She has told me that she could find someone closer for me so I am sure they might could recommend someone closer to where you are. But I will always use her because she knows what he has been through. I do know that you have to find someone who does these types of surgeries on a regular basis, not just a general ENT. The first surgery took about 5 hours but the second was more like 2 1/2. If you need anything or have any questions about my experience feel free to e-mail me directly.

Thank you,

Athena HUbbert

From: Pamela Waling <pamcrt2002 (DOT) com>Subject: new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is

not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

I hope I didn't miss use the words when I said life long battle, what I should have explained was that, as his doctor explained, we would have to make sure that Carr is checked and any regrowth taken care of for the rest of his life. His doctor has given us lots of hope that his is under control and will hopefully never come back. But we will always keep a close eye on it.

From: Pamela Waling <pamcrt2002 (DOT) com>Subject: new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is

not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

Hi i know how hard it is when you first find out. my daughter was three when we were told. She failed her preschool hearing test and they thought it was due to fluid but when he got in the left ear for tubes he found the c-toma. Like you he didn't deal with them so we saw a specialist. Katy had her first surgery June 20th. She lost 2 of her hearing bones and is set for surgery # 2 Dec. 30th. She did awsome after first surgery. She had pain day one and two but the it was hard to keep her down. She has sever hearing loss in left ear and seems to compansate pretty good with her right ear most of the time. Her dr told me 40-60% chance it will come back so he will see her every 6 months so hopefully if it comes back we can catch it right away. All I can really say to you is it won't be as bad as you think It is always hard watching you little one go through it but

children are amazing and can take a lot more then us adults can. Good luck, I hope I helped put your mind at ease a little. Steph I

From: Pamela Waling <pamcrt2002@...>Subject: new to group, just need support and helpcholesteatoma Date: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is

not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

To all of those with children with cholesteatomas, don't let them see how worried you really are and they will deal with it better. My daughter is 9 years old and having her forth surgery next week. she just got her purple belt in TaeKwanDo, plays violin beautifully, and just got straight A's on her 1st report card in 4th grade. we are just regular people and this is our biggest issue right now, but it doesn't keep us down. My daughter just keeps on going. She just told me tonight she doesn't plan on missing more than 2 karate classes so she can learn her new form in time for the tournament November 15(3 weeks after surgery). If I let her, she sure will get to her goal! I'm so sorry their are so many of you whose children are going through this. I hate that my baby has to even think about someone cutting her ear. I dwell on it in my head, but not to

her.

From: Pamela Waling <pamcrt2002 (DOT) com>Subject: new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is

not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

Yeah, I have to try really hard with that one. My daughter knows the word, we

call it her $20 dollar word! But as far as that goes, she is busy " planning "

her Hannah Montana outfit for Halloween... in her words, " I have the hair and

the voice, now all I need is the clothes. " So she is self making her costume

this year... so I am letting her focus on that. She has enough to worry about

being a kid, she doesn't need this... I'll gladly take that burden for her any

day.

Pamela Waling " smile, it confuses people... "

>

> From: Pamela Waling <pamcrt2002 (DOT) com>

> Subject: new to group, just need support

> and help

> cholesteatoma

> Date: Tuesday, October 14, 2008, 9:12 PM

>

>

>

>

> Hi everyone...

>

> My daughter who will be 6 in November was just diagnosed

> with having a cholesteatoma in

> her right ear as of last Wednesday. She had surgery to have

> a tube put in her left ear (which

> is her " normal " ear during the surgery) and a

> polyp removed from her right. The ENT felt he

> was not able to help her so he sent us to a specialist who

> deals with c-tomas and we saw him

> today. He wants to do surgery on her on the 27th of this

> month. Apparently hers sticks out

> into her middle ear and into her mastoid region. It has

> degraded her hearing bones and he

> thinks he will have to rebuild them at a later date... he

> told me we are looking at 2 surgeries

> for this.

>

> I guess my thoughts/ questions are, how many of you were

> diagnosed with this as kids and it

> came back as teens/ adults? She does have SIGNIFICANT

> hearing loss, like 80% (I guess I am

> using the right term, I am new at this, sorry...) so he is

> not sure of how much she will get

> back. I am just not sure of what to expect. And he said the

> probability of this coming back is

> high so she has to be monitored closely for a very long

> time.

>

> Any help would be appreciated. I pretty much feel like a

> crappy mom because of this (even

> though I know it isn't my fault...)

[Guest guest]

,

My son is almost 9 and is in 3rd grade. We have not been successful in reconstruction after 2 attempts and I am usually pretty good about dealing with it. Lately I have been very worried about him struggling in school even though his grades are good. If he comes home with one bad grade it just worries me so that he is having problems. What make it worse was last week I had emailed the teacher to let her know his surgery failed to improve his hearing and to continue with him up front in the class and to make sure he got her instructions because he said he has more trouble with background noise. She took this as I was saying her class was noisy and announced to him in front of the class that his mom said he told her her class was noisy and made him name who in the class was noisy. Then she moved them away from Nick. For the rest of the day if anyone spoke, she would say "Be quiet, Nick can not hear!" When I picked him up from school he said , Mom, please do not ever talk to my teacher again. This made me sad and angry and I let the teacher and principal know about it. She was sorry and things in the class seem OK for now. I know my anxiety is wearing on him. Yesterday they sent a computer generated letter home about a new reading program at school that showed Nick was reading at a 1st grade level. I was sick all night about it. Today the principal said this is not an accurate test and not to worry because he was on track last year.

I just worry so much about this kid and I know he tries so hard in school. The teacher said he follows her with his eyes all day.

I know I need to relax, keep a watchful eye and hope in the future his hearing will be restored.

I was wondering how much hearing your daughter has had and what if any assistance she has had in school. It is so wonderful to hear she is succeeding and overcoming this.

new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

Pamela,

This is really to you and all parents out there. You need to stop being

so hard on yourselves. I, for one, applaud you for doing things like

being persistent with the health care of your children. This disease

seems to be misdiagnosed so much that it flabbergasts me. I can

remember having a really bad earache for more than two weeks as a kid.

My mom had already passed away a few years earlier and my poor dad was

about to get married. I had all kinds of adults around me, but instead

of taking me to a doctor, ... well, my one uncle blew cigar smoke in my

ear! Needless to say, the remedy was not successful. So, for Pete's

sake, please cut yourself a break. Think about what you've done -

you've listened carefully, often repeatedly to your child do their best

to articulate a situation that even adults like myself had trouble

realizing or describing. Then you had to overcome misplaced trust in

someone you really should have been able to trust. Finally your

unending love for your child and your persistence got you to the medical

help that was needed. From my vantage point, that is nothing short of

astounding and I can only tip my hat to you. So, chin up!

The monitoring that you mention - please work very hard to impress upon

your child that this is for the long haul. It will be a life-long

monitoring activity - and one that isn't that bad. This will likely

become important to reinforce when they're in their twenties and perhaps

feeling a bit invulnerable or under insured and putting things off that

they shouldn't.

All the best,

Matt

Pamela Waling wrote:

>

> Hi everyone...

>

> My daughter who will be 6 in November was just diagnosed with having a

> cholesteatoma in

> her right ear as of last Wednesday. She had surgery to have a tube put

> in her left ear (which

> is her " normal " ear during the surgery) and a polyp removed from her

> right. The ENT felt he

> was not able to help her so he sent us to a specialist who deals with

> c-tomas and we saw him

> today. He wants to do surgery on her on the 27th of this month.

> Apparently hers sticks out

> into her middle ear and into her mastoid region. It has degraded her

> hearing bones and he

> thinks he will have to rebuild them at a later date... he told me we

> are looking at 2 surgeries

> for this.

>

> I guess my thoughts/ questions are, how many of you were diagnosed

> with this as kids and it

> came back as teens/ adults? She does have SIGNIFICANT hearing loss,

> like 80% (I guess I am

> using the right term, I am new at this, sorry...) so he is not sure of

> how much she will get

> back. I am just not sure of what to expect. And he said the

> probability of this coming back is

> high so she has to be monitored closely for a very long time.

>

> Any help would be appreciated. I pretty much feel like a crappy mom

> because of this (even

> though I know it isn't my fault...)

>

>

--

[Guest guest]

Maybe you can help your son work out a "signal" with the teacher when he cannot hear. My son (age 6yo, 1st grade) raises 2 fingers to alert the teacher that he cannot hear. No one else in the class knows what the signal is, but it works out well and allows him to begin advocating for himself when he has a problem. This is just a suggestion that has worked for him. He also sits right up front of the class.

I also worry a lot about his ability to hear and learn to read, etc. He doesn't need hearing aids, according to his doctor. He does get speech-language therapy 2x a week. I try not to let him sense my anxiety either, but I do worry a lot. His next f/u appointment is at the end of this month. I plan to ask for another hearing test, even though the last one was only 6 months ago.

Best of luck to your son, and we should both try not to worry so much.

Nina

Oct 16, 2008 03:38:37 AM, cholesteatoma wrote:

,

My son is almost 9 and is in 3rd grade. We have not been successful in reconstruction after 2 attempts and I am usually pretty good about dealing with it. Lately I have been very worried about him struggling in school even though his grades are good. If he comes home with one bad grade it just worries me so that he is having problems. What make it worse was last week I had emailed the teacher to let her know his surgery failed to improve his hearing and to continue with him up front in the class and to make sure he got her instructions because he said he has more trouble with background noise. She took this as I was saying her class was noisy and announced to him in front of the class that his mom said he told her her class was noisy and made him name who in the class was noisy. Then she moved them away from Nick. For the rest of the day if anyone spoke, she would say "Be quiet, Nick can not hear!" When I picked him up from school he said , Mom, please do not ever talk to my teacher again. This made me sad and angry and I let the teacher and principal know about it. She was sorry and things in the class seem OK for now. I know my anxiety is wearing on him. Yesterday they sent a computer generated letter home about a new reading program at school that showed Nick was reading at a 1st grade level. I was sick all night about it. Today the principal said this is not an accurate test and not to worry because he was on track last year.

I just worry so much about this kid and I know he tries so hard in school. The teacher said he follows her with his eyes all day.

I know I need to relax, keep a watchful eye and hope in the future his hearing will be restored.

I was wondering how much hearing your daughter has had and what if any assistance she has had in school. It is so wonderful to hear she is succeeding and overcoming this.

new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]



Yes we do have him up front and she is supposed to keep eye contact with him. He say she is soo loud he can hear her. I think he is so used to the hearing deficit he does not realize what he is missing.

A funny story that shows he misses things, a little girl in the class said her dad had diabetes and Nick came home and said 's dad died. After making a few calls and causing quite a commotion, I realized he did hear the wording correctly. Them mom's all laughed later!

new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

Hey Stacey. i'm sorry to hear your son is having a tough time with school. That was not right of his teacher to do that. She needs to realize that singling him out is not good for his self esteem, especially at this age. Kids are cruel. you should ask her to please not single him out and not discuss his hearing troubles unles he decides to bring it up. She could quietly ask him periodically if he is ok. My full time job is school nurse, so I have been able to test Gabby's hearing myself. She had an audiogram a few years ago and did not do so well, but didn't need a hearing aid. She would not pass a screening on my machine as of today. I am amazed, however, at how well she does. You would not notice that she has any hearing deficit. I think that she has adjusted to it over time. She does turn her head to her good ear often,but only I really notice it. Only the

second ctoma was attached to her hearing bones and she has not needed reconstruction so her hearing is probably not as bad as your son's hearing. Maybe a hearing aid would help. As far as the reading goes, I have Gabby read out loud to me for 15 to 30 minutes 4 to 5 days a week. I think this has really helped her reading. If you don't already, maybe you could try. We don't always have the time, but we try. As long as you continue to be there for him, he'll be ok!

From: Pamela Waling <pamcrt2002 (DOT) com>Subject: new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is

not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

Thanks ,

I am feeling better today and a little less helpless with Nicks situation. I decided to make him feel empowered. My husband slapped me around a little and reminded me about all of the positive things he has done in school such as being the only one to get a 100 on his history test.

As for his teacher, we had a meeting with her and the principal and I let her know how bad she made him feel in front of the class. I could not believe she could be so thoughtless, but she has a reputation of picking on the kids weaknesses. I let her know if I heard one more thing she would be back in the office with me. I have heard a few kids say Nick is deaf and it really hurts his feelings. I tell them we are going to fix it soon with a robotic ear as I am trying not to tear up.

Believe it or not, he has always passed his hearing screenings at school. How can that be?

I have talked to the audiologist about the FM system, but Nick says he does not need it and I did not want to push it right now. I think I will wait for his next appt in 2 months to re-eval. It is probably the wrong way to think, but I don't want to embarrass him. If I find he needs it to improve his learning then I will have to make that decision for him. I thought I could buy one and install it in the class over Christmas break and not even tell him.

We are reading to him and him to us every night now and I hope that helps!

Thank you so much for the encouragement. I was really feeling helpless and guilty for all he is going through.

P.S. I am a nurse also!

new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

You sound like a great mom. It is so hard not to feel guilty, but I know that things happen for a reason and I believe in God and that he will take care of my boby with my help. As nurses, we know it could be so much worse! By the way, so cool you are a nurse, too. I have no idea how he could have passed his hearing screening at school, unless possibly the nurse gave him visual cues unintentionally. You have probably noticed that he is very observant and pays close attention to people when they talk to him and he probably pays attention to gestures you or I might not notice at all. Gabby does this. WOW. 100 in history! How awesome is that! And I can totally relate to not wanting to push anything on him. It's really easy to give in to them, because they have to go through all of this. Just do what you feel is best for him at the time and as long as you are

taking care of him, he'll be ok. Thank you for your responses. I am so worried about Gabby's surgery next week and feel that it might be worse than we think this time. I think she is even getting migraines, because she gets these terrible headaches with nausea and eye pain that lasts for a couple days. I just feel so helpless sometimes,too.

From: Pamela Waling <pamcrt2002 (DOT) com>Subject: new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is

not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

Matt,

Thank you. As always, very well put.

--- In cholesteatoma , "

[Guest guest]

My daughter is in kindergarten and we are facing her first surgery on the 27th.

I emailed her teacher today about getting with her for a conference to explain

the situation, kind of in detail what a ctoma is, etc... and she hasn't called

or emailed back. Since we have been dealing with Masie's (thought) ear

infection since the beginning of school I think she is tired of me emailing her,

but you know what, this is my child's health at stake here, I don't care if it

is just kindergarten, this is the building block of her school. She just

irritates me.

Also, Masie was in a pre-k program, has been for over a year and supposedly

passed her hearing tests... makes me wonder now if she really did...

Pamela Waling " smile, it confuses people... "

>

> From: Pamela Waling <pamcrt2002 (DOT) com>

> Subject: new to group, just need support

> and help

> cholesteatoma

> Date: Tuesday, October 14, 2008, 9:12 PM

>

>

>

>

> Hi everyone...

>

> My daughter who will be 6 in November was just diagnosed

> with having a cholesteatoma in

> her right ear as of last Wednesday. She had surgery to have

> a tube put in her left ear (which

> is her " normal " ear during the surgery) and a

> polyp removed from her right. The ENT felt he

> was not able to help her so he sent us to a specialist who

> deals with c-tomas and we saw him

> today. He wants to do surgery on her on the 27th of this

> month. Apparently hers sticks out

> into her middle ear and into her mastoid region. It has

> degraded her hearing bones and he

> thinks he will have to rebuild them at a later date... he

> told me we are looking at 2 surgeries

> for this.

>

> I guess my thoughts/ questions are, how many of you were

> diagnosed with this as kids and it

> came back as teens/ adults? She does have SIGNIFICANT

> hearing loss, like 80% (I guess I am

> using the right term, I am new at this, sorry...) so he is

> not sure of how much she will get

> back. I am just not sure of what to expect. And he said the

> probability of this coming back is

> high so she has to be monitored closely for a very long

> time.

>

> Any help would be appreciated. I pretty much feel like a

> crappy mom because of this (even

> though I know it isn't my fault...)

__________________________________________________

[Guest guest]

You are right, he is so very observant, especially for a boy. When he was really young I could not believe how he would watch my face when I spoke to him. Little did I know. My older son never looks at me so it is kind of nice.

Have you had a good eye exam for her? Over the summer Nick had to get glasses and he also had a convergence problem which causes eye pain. Have her focus on the eraser of a pencil and slowly bring it to her nose and see if her eyes stay in or shift out. It is a muscle problem and can cause eye strain. Try to focus on treats she will get after surgery and have people in your family and her friends stop by with little gifts. This always makes Nicks sx easier. He loves to be spoiled. I have to tell you the first surgery was the worst after that he was great the next day after the bandage came off. Is she having a 4th surgery to remove more Cholesteatoma? When was her last surgery?

new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

Gabby does have this problem. And she has another one of those headaches right now. She has worn glasses since 1st grade. Her last surgery was last October which was the first one behind the ear to remove cholesteatoma and build a graft to her 80% perforation. This time, the doc doesn't see cholesteatoma, but she has about 50% perforation and looks like a retraction pocket which will form another ctoma if left alone. She has been having really bad infections since June with foul smelling, thick nasty drainage and also had a fungal infection which we treated with lotrisone drops.Have you ever seen that? It was so gross. She had black stuff coming out of her ear!!!And the smell!! Yuk. She gets headaches, c/o dizziness, hears noises in her ear all the time. it's time to go in and see what's up. My family is so good at spoiling her. they've already shown

me some of the stuff the bought her. Whatever makes her happy and hurt less is our moto!

From: Pamela Waling <pamcrt2002 (DOT) com>Subject: new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is

not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

Thanks,Matt.

From: katieandniall <niallstewart@...>Subject: Re: new to group, just need support and helpcholesteatoma Date: Thursday, October 16, 2008, 7:53 PM

Matt,Thank you. As always, very well put.--- In cholesteatoma, "

[Guest guest]

My ear problems started at age 8 and by third grade I was having hearing

difficulties. My third grade teacher was a wretched soul too! It's 40

years later I'm still mad at that bag of dirt! She made my life a

living " h " " e " " double hockey sticks " that year. Maybe it's something

about the third grade?!!

I still contend that I should have gotten at least a C in penmanship!

Matt

nels4487@... wrote:

>

> Thanks ,

> I am feeling better today and a little less helpless with Nicks

> situation. I decided to make him feel empowered. My husband slapped

> me around a little and reminded me about all of the positive things he

> has done in school such as being the only one to get a 100 on his

> history test.

> As for his teacher, we had a meeting with her and the principal and I

> let her know how bad she made him feel in front of the class. I could

> not believe she could be so thoughtless, but she has a reputation

> of picking on the kids weaknesses. I let her know if I heard one more

> thing she would be back in the office with me. I have heard a few

> kids say Nick is deaf and it really hurts his feelings. I tell them

> we are going to fix it soon with a robotic ear as I am trying not to

> tear up.

> Believe it or not, he has always passed his hearing screenings at

> school. How can that be?

> I have talked to the audiologist about the FM system, but Nick says he

> does not need it and I did not want to push it right now. I think I

> will wait for his next appt in 2 months to re-eval. It is probably

> the wrong way to think, but I don't want to embarrass him. If I find

> he needs it to improve his learning then I will have to make that

> decision for him. I thought I could buy one and install it in the

> class over Christmas break and not even tell him.

> We are reading to him and him to us every night now and I hope that helps!

> Thank you so much for the encouragement. I was really feeling

> helpless and guilty for all he is going through.

> P.S. I am a nurse also!

>

>

>

> new to group, just need

> support and help

> cholesteatoma

> Date: Tuesday, October 14, 2008, 9:12 PM

>

> Hi everyone...

>

> My daughter who will be 6 in November was just

> diagnosed with having a cholesteatoma in

> her right ear as of last Wednesday. She had

> surgery to have a tube put in her left ear (which

> is her " normal " ear during the surgery) and a

> polyp removed from her right. The ENT felt he

> was not able to help her so he sent us to a

> specialist who deals with c-tomas and we saw him

> today. He wants to do surgery on her on the 27th

> of this month. Apparently hers sticks out

> into her middle ear and into her mastoid region.

> It has degraded her hearing bones and he

> thinks he will have to rebuild them at a later

> date... he told me we are looking at 2 surgeries

> for this.

>

> I guess my thoughts/ questions are, how many of

> you were diagnosed with this as kids and it

> came back as teens/ adults? She does have

> SIGNIFICANT hearing loss, like 80% (I guess I am

> using the right term, I am new at this, sorry...)

> so he is not sure of how much she will get

> back. I am just not sure of what to expect. And he

> said the probability of this coming back is

> high so she has to be monitored closely for a very

> long time.

>

> Any help would be appreciated. I pretty much feel

> like a crappy mom because of this (even

> though I know it isn't my fault...)

>

>

>

>

>

--

[Guest guest]

Gabby was in kindergarten when she had her first surgery. Her teacher was great and we communicated well. You might want to go talk to the principal at this point. It's not ok for her to ignore you. How about a school nurse? is getting her in class with a more empathetic teacher possible? By the way, gabby ended up doing just fine. Hang in there. I know this is a very scary time for yall. Prayers help.> > From: Pamela Waling <pamcrt2002@ . com>> Subject: new to group, just need support> and help> cholesteatoma> Date: Tuesday, October 14, 2008, 9:12 PM> > > > > Hi everyone...> > My daughter who

will be 6 in November was just diagnosed> with having a cholesteatoma in > her right ear as of last Wednesday. She had surgery to have> a tube put in her left ear (which > is her "normal" ear during the surgery) and a> polyp removed from her right. The ENT felt he > was not able to help her so he sent us to a specialist who> deals with c-tomas and we saw him > today. He wants to do surgery on her on the 27th of this> month. Apparently hers sticks out > into her middle ear and into her mastoid region. It has> degraded her hearing bones and he > thinks he will have to rebuild them at a later date... he> told me we are looking at 2 surgeries > for this.> > I guess my thoughts/ questions are, how many of you were> diagnosed with this as kids and it > came back as teens/ adults? She does have SIGNIFICANT> hearing loss, like 80%

(I guess I am > using the right term, I am new at this, sorry...) so he is> not sure of how much she will get > back. I am just not sure of what to expect. And he said the> probability of this coming back is > high so she has to be monitored closely for a very long> time. > > Any help would be appreciated. I pretty much feel like a> crappy mom because of this (even > though I know it isn't my fault...)____________ _________ _________ _________ _________ __