Re: Parents of children with c-toma

[Guest guest]

My son had a radical mastoidectomy when he was 5. We also have to go through constant watch to keep his ear clean. We have not been very successful. He had another surgery when he was 9 to remove anther c-toma. We found out yesterday that he will have his third surgery on the 7th of March. His new doctor told us that this could be the last surgery but he can not promise. They had to make the opening bigger at the 2nd surgery and are going even bigger at this one. This is a hard thing to deal with and it is a life long commitment. As your child gets older they can care for and protect the ear better for their self. But I never quit worrying about if it has come back or if the ear is dry. I also have wondered how many other parents have to go through this it is very stressful.

Thanks

Parents of children with c-toma

I was wondering how many parents are out there who may be going through a similar situation. My son was diagnosed with a c-toma about 2 years ago at the age of 9. His first surgery was about four hours long and they removed all the bones in his ear except for one, the smallest one. The c-toma had destroyed the rest and had reached his skull, but thankfully did no damage to it. We've had several more surgeries to have his ear "professionally" cleaned out. These occur at least twice a year. The doctor says this will be an ongoing thing pretty much for the rest of his life as far as keeping the ear clean. My son also has to have drops in his ear every night to help keep it clean. I was just wondering how many other parents have gone through something like this or similar to this? And any information or stories you'd like to share, I'd really appreciate since I've never really understood this whole thing and why it had to happen. My son only had maybe 2 or 3 ear infections as a baby and toddler.Thanks for any and all support,Chrissy

[Guest guest]

did your son have an aquired c-toma or a congenital one? My son, Miles is 5 1/2 and just had his first surgery for a congenital cholesteatoma. Miles surgery time was almost 6 hours and all of the bones in his ear were removed. We have had one follow up appointment so far and are using steroid drops to help the eardrum regeneration as they had to take about 95% of the eardrum as well since the underside was covered in the tumor.

You aren't alone in worrying about your son...feel free to email me.

JWWOODS at gmail dot com

Joycelyn

On 2/8/06, chrissydisp24 <chrissydisp24@...> wrote:

I was wondering how many parents are out there who may be going through a similar situation. My son was diagnosed with a c-toma about 2 years ago at the age of 9. His first surgery was about four hours long and they removed all the bones in his ear except for one, the smallest one. The c-toma had destroyed the rest and had reached his skull, but thankfully did no damage to it. We've had several more surgeries to have his ear " professionally " cleaned out. These occur at least twice a year. The doctor says this will be an ongoing thing pretty much for the rest of his life as far as keeping the ear clean. My son also has to have drops in his ear every night to help keep it clean. I was just wondering how many other parents have gone through something like this or similar to this? And any information or stories you'd like to share, I'd really appreciate since I've never really understood this whole thing and why it had to happen. My son only had maybe 2 or 3 ear infections as a baby and toddler.Thanks for any and all support,Chrissy

[Guest guest]

My daughter,now nearly 13 was diagnosed at age 10. I suspect congential c-toma.

She had surgery in Nov. 2003 with prothesis. Hearing is still very limited in

that ear (left) We have chosen not to do other surgeries. She is very active and

healthy and loves music and sports. She is behind in language but making great

strides in that and wants to be a vet or an architect. I focus on the living and

grateful it was dianosed and removed. Sallie (Gainesville, Fl. area)

[Guest guest]

I'm not sure what kind he had there it was very hard to find information when he had his first one. My son has no eardrum and there is not possibility for reconstruction. I am very thankful that he can hear perfectly out of the right ear and does not need a hearing aid. By the time they found his he had already made the adjustment in the right ear. He did have some processing problem and we repeated him in first grade. We put him through extra tutoring because he missed all of his phonics. He know has overcome the processing and reading problems and is doing fine. His doctor did tell me that since he had his first surgery at 5 that all of the bones in the ear are not developed and even though they removed all that is there the mastoid bone has continued to develop and that is what is causing the c-tomas to come back. He also said that he can not tell us that our son will not have to have another surgery. I just these things to go away.

Re: Parents of children with c-toma

did your son have an aquired c-toma or a congenital one? My son, Miles is 5 1/2 and just had his first surgery for a congenital cholesteatoma. Miles surgery time was almost 6 hours and all of the bones in his ear were removed. We have had one follow up appointment so far and are using steroid drops to help the eardrum regeneration as they had to take about 95% of the eardrum as well since the underside was covered in the tumor.

You aren't alone in worrying about your son...feel free to email me.

JWWOODS at gmail dot com

Joycelyn

On 2/8/06, chrissydisp24 <chrissydisp24@...> wrote:

I was wondering how many parents are out there who may be going through a similar situation. My son was diagnosed with a c-toma about 2 years ago at the age of 9. His first surgery was about four hours long and they removed all the bones in his ear except for one, the smallest one. The c-toma had destroyed the rest and had reached his skull, but thankfully did no damage to it. We've had several more surgeries to have his ear "professionally" cleaned out. These occur at least twice a year. The doctor says this will be an ongoing thing pretty much for the rest of his life as far as keeping the ear clean. My son also has to have drops in his ear every night to help keep it clean. I was just wondering how many other parents have gone through something like this or similar to this? And any information or stories you'd like to share, I'd really appreciate since I've never really understood this whole thing and why it had to happen. My son only had maybe 2 or 3 ear infections as a baby and toddler.Thanks for any and all support,Chrissy

[Guest guest]

Chrissy,

My son was diagnosed at 4years old. His 2nd look surgery turned into a CWD.

We go every 3 months to have his ear cleaned. I worry everytime that the

c'toma has returned. We go back on Feb. 15th and I'm already getting nervous

about it. Can I ask what kind of drops your son uses to help keep his ear

clean? I'm wondering if we can get something to help as well. My son was

diagnosed after an ongoing infection that we tried to treat for 6 months

before we found an ENT that diagnosed him w/ the c'toma. My son also only

had 2 or 3 infections thru his life. The ENT thought it was probably

congenital because they grow with the child and quite often don't get big

enough to detect until they are about 5years old. At least that's what he

told us. Then the surgeon said he found a retraction pocket and that made it

acquired...then later told us it could have possibly been congenital. I

guess it doesn't make much difference, it still came back and we still have

to worry about it. Don't keep asking yourself " why? " you'll never find a

suitable answer, I don't think anyone really knows. As far as I'm concerned

nobody can ever explain it well enough to make me understand why it happened

to my son.....we just know he has it and we have to live with it and be

thankful it is something that can be watched and treated and nothing more

serious. Easy to say, harder to put into action! lol I still have to remind

myself of that everytime we go in for cleanings.

Good luck

Barbara

>From: " chrissydisp24 " <chrissydisp24@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Parents of children with c-toma

>Date: Thu, 09 Feb 2006 02:56:13 -0000

>

>I was wondering how many parents are out there who may be going

>through a similar situation. My son was diagnosed with a c-toma about

>2 years ago at the age of 9. His first surgery was about four hours

>long and they removed all the bones in his ear except for one, the

>smallest one. The c-toma had destroyed the rest and had reached his

>skull, but thankfully did no damage to it. We've had several more

>surgeries to have his ear " professionally " cleaned out. These occur

>at least twice a year. The doctor says this will be an ongoing thing

>pretty much for the rest of his life as far as keeping the ear clean.

>My son also has to have drops in his ear every night to help keep it

>clean. I was just wondering how many other parents have gone through

>something like this or similar to this? And any information or

>stories you'd like to share, I'd really appreciate since I've never

>really understood this whole thing and why it had to happen. My son

>only had maybe 2 or 3 ear infections as a baby and toddler.

>

>Thanks for any and all support,

>Chrissy

>

>

>

>

>

[Guest guest]

,

My son also had his surgery very young, at 4 also in his left ear. It's

interesting to hear about the mastoid still developing. I've never heard

that, but it makes total sense....although it sucks to hear that the little

ones are likely to undergo surgery until the mastiod is done.

I am also curious about your sons tutoring and schoolwork. My son starts

kindergarten this fall and I am really concerned because his speech has not

come along like it should. He is in speech therapy and has been since last

fall. I am not noticing a lot of difference, but his therapist said he is

slowly improving and the hearing loss just makes it go that much slower.He

has perfect hearing in his right ear and had already started compensating

long before he was diagnosed, like your son. I am concerned that his

spelling, reading, language will be greatly affected. I know he isn't

speaking clearly and I'm not real sure how much he is hearing correctly. Did

your son start with a speech therapist? can you give me any advice about how

to work with his school and help him with this?

Thanks

Barbara

>From: " Dragoo " <adragoo2@...>

>Reply-cholesteatoma

><cholesteatoma >

>Subject: Re: Parents of children with c-toma

>Date: Thu, 9 Feb 2006 08:22:05 -0600

>

>I'm not sure what kind he had there it was very hard to find information

>when he had his first one. My son has no eardrum and there is not

>possibility for reconstruction. I am very thankful that he can hear

>perfectly out of the right ear and does not need a hearing aid. By the

>time they found his he had already made the adjustment in the right ear.

>He did have some processing problem and we repeated him in first grade. We

>put him through extra tutoring because he missed all of his phonics. He

>know has overcome the processing and reading problems and is doing fine.

>His doctor did tell me that since he had his first surgery at 5 that all of

>the bones in the ear are not developed and even though they removed all

>that is there the mastoid bone has continued to develop and that is what is

>causing the c-tomas to come back. He also said that he can not tell us

>that our son will not have to have another surgery. I just these things to

>go away.

>

>

[Guest guest]

Barbara,

I can give you some advise lets start with the tutoring we sent him to Sylvan learning center for his reading and within a year and a half he was right on target. The school put him in speech for the processing problem and he went through that through the 5th grade. It does take time but they will work through it. We live in Texas and not only did have to worry about his grades we have a mandatory test that you must pass to move on to the next grade. He took that test with no help in 5th grade and passed. We had a really bad kindegarten teacher so I was determined to not get another teacher like her. We had a letter written by his doctor and put in his file. The letter stated that he must be positioned in the class on the left side of the teacher and in the front. We have not had a problem with the school following the instructions although I check on this from time to time. I can tell you that as they get older it seems to affects them more emotionally and the recovery from the surgeries get harder. My son was in alot of pain after the 2nd surgery. I hope this has helped. We use ciprodex drops to help keep his ear clean.

Re: Parents of children with c-toma>Date: Thu, 9 Feb 2006 08:22:05 -0600>>I'm not sure what kind he had there it was very hard to find information >when he had his first one. My son has no eardrum and there is not >possibility for reconstruction. I am very thankful that he can hear >perfectly out of the right ear and does not need a hearing aid. By the >time they found his he had already made the adjustment in the right ear. >He did have some processing problem and we repeated him in first grade. We >put him through extra tutoring because he missed all of his phonics. He >know has overcome the processing and reading problems and is doing fine. >His doctor did tell me that since he had his first surgery at 5 that all of >the bones in the ear are not developed and even though they removed all >that is there the mastoid bone has continued to develop and that is what is >causing the c-tomas to come back. He also said that he can not tell us >that our son will not have to have another surgery. I just these things to >go away.>>

[Guest guest]

For our daughter, we did speech and language through the school. Last

year they added reading because her spelling was really bad.

This year she was diagnosed with a learning disability in written

expression, and though it is impossible to know for sure, I think it's

all related to her hearing. We've put her in a special school here

for kids with LD, and we have great hopes for that. Though she was

theoretically doing well in class, we had standardized testing done

that showed a very different picture. Plus, I did my own observations

and I knew what level I thought she should be at. Because of the

hearing issue, I would recommend getting some very thorough testing

done either through the school system or (preferred) privately.

We also got her a hearing aid for her unilateral hearing loss, and it

has made a world of difference. She even wears it when she doesn't

have to. I haven't heard of someone with unilateral loss being able

to compensate for poor word discrimination in noise or for lack of

directional hearing with the good ear. Does anyone know of research

articles or websites that describe that?

There's a lot of research out there that recommends FM systems in the

classroom for children with unilateral loss. I think that would be

worth exploring, too, and public schools should provide it for free.

Lynn

[Guest guest]

Lynn, what is a FM system? My son has written expression difficulties

too. Before he was diagnosed with c-toma, his teachers were

convinced he had ADD, long story short he was deaf in one ear.

I got to go but the whole school process has been extremely

frustrating. I'll post at another time our school experiences.

Have a good day, Jen.

>

> For our daughter, we did speech and language through the school.

Last

> year they added reading because her spelling was really bad.

> This year she was diagnosed with a learning disability in written

> expression, and though it is impossible to know for sure, I think

it's

> all related to her hearing. We've put her in a special school here

> for kids with LD, and we have great hopes for that. Though she was

> theoretically doing well in class, we had standardized testing done

> that showed a very different picture. Plus, I did my own

observations

> and I knew what level I thought she should be at. Because of the

> hearing issue, I would recommend getting some very thorough testing

> done either through the school system or (preferred) privately.

>

> We also got her a hearing aid for her unilateral hearing loss, and

it

> has made a world of difference. She even wears it when she doesn't

> have to. I haven't heard of someone with unilateral loss being able

> to compensate for poor word discrimination in noise or for lack of

> directional hearing with the good ear. Does anyone know of research

> articles or websites that describe that?

>

> There's a lot of research out there that recommends FM systems in

the

> classroom for children with unilateral loss. I think that would be

> worth exploring, too, and public schools should provide it for free.

>

> Lynn

>

[Guest guest]

Our school experience was ghastly, hence the private school. However,

they did provide an FM system. The teacher wears a mic, and the kid

has either a boot on his/her hearing aid, or a box on the desk, or a

small receiver in the ear, or even there could be speakers placed

around the room. It all depends on what they offer you. I would not

take no for an answer on this. The research is quite extensive, and

it makes a huge difference. The kids don't know what they are

missing... 30% of kids with unilateral loss have been found to fail a

grade, and the others are affected, too, to some degree.

Tell about your school when you get a chance,

Lynn

-

> Lynn, what is a FM system? My son has written expression difficulties

> too. Before he was diagnosed with c-toma, his teachers were

> convinced he had ADD, long story short he was deaf in one ear.

> I got to go but the whole school process has been extremely

> frustrating. I'll post at another time our school experiences.

> Have a good day, Jen.

[Guest guest]

Lynn, please provide the research on school difficulties in relation

to c-toma.

We also moved my son this year to a private school for 7th grade,

less kids, less noise and better socially.

I had suspected that my son couldn't hear when he was 3 years old,

our family doctor did a simple hearing test and said he was fine. He

actually has super human hearing in the good ear and managed to

compensate and pass all those simple tests. All through the

elementary years, something was not adding up, even the ADD theroy

the teachers were pushing. He was diagnosed in the 4th grade after

sustaining a concussion during football.

He is a verbal learner, bright and able to score extremely high in

some areas with his organization and writing scores being very low

put him in a 'normal' area so no learning support for us in the

public school.

He copes very well with his c-toma that I have had a hard time

getting through to his teachers that it is exhausting being in a

class trying to focus on the teacher's lecture and not sure how this

would affect his writing.

So if you have any research to point me to, I would love to share it

with his educators.

Thanks so much, Jen.

>

> Our school experience was ghastly, hence the private school.

However,

> they did provide an FM system. The teacher wears a mic, and the kid

> has either a boot on his/her hearing aid, or a box on the desk, or a

> small receiver in the ear, or even there could be speakers placed

> around the room. It all depends on what they offer you. I would

not

> take no for an answer on this. The research is quite extensive, and

> it makes a huge difference. The kids don't know what they are

> missing... 30% of kids with unilateral loss have been found to

fail a

> grade, and the others are affected, too, to some degree.

>

> Tell about your school when you get a chance,

> Lynn

>

> -

> > Lynn, what is a FM system? My son has written expression

difficulties

> > too. Before he was diagnosed with c-toma, his teachers were

> > convinced he had ADD, long story short he was deaf in one ear.

> > I got to go but the whole school process has been extremely

> > frustrating. I'll post at another time our school experiences.

> > Have a good day, Jen.

>