Re: New Member - 6 year old son just diagnosed

[Guest guest]

Hi --

Sorry you and your family are having to deal with this. The not

knowing what is going on and the waiting are the worst part

especially for the parents.

Kids seem to bounce back very quickly from the surgery (usually

within 24-48 hours they are feeling almost 100%). While the CT scan

can show if there is something in your son's ear, most of the time it

doesn't show an accurate reading of the extent of the ctoma. Usually

the surgeon can't get an accurate view of everything until he/she is

actually operating. The surgery can take several hours -- if they

give you an estimate on how long the surgery will take, add an hour

on to the estimate. Also, ask the surgeon to send someone out to

update you periodically throughout the surgery. For the surgery, the

surgeon can go in through the ear canal (less invasive/less stitches)

or from behind the ear. There are 2 different types of packing that

can be used in the ear after surgery (1) gelfoam (dissolves on its

own and doesn't have to be removed) and (2) guaze type (has to be

removed a couple of weeks after surgery. Your son will be on limited

activity after the surgery for about 3-5 weeks -- no recess, gym,

roughhousing. This is the hardest part because your child feels good

and doesn't understand why they can't run around! Usually your son

will not be able to get water in the ear that was operated on until

it is healed and sometimes the no water in the ear is a permanent

thing. There are various types of earplugs available -- putty type

that you can buy at the drug store and also custom made plugs that

your audiologist can fit your son for. There will be several follow

up visits after the surgery and usually there will be a 2nd surgery

done 6-12 months later to make sure that the ctoma has not returned.

Hope this helps.

Candy

> Hi, I am . My 6 yr old was just diagnosed with a cholesteatoma

> yesterday.

> I have been trying to find all I can about it.

> He had frequent ear infections as a baby/toddler. I was told last

> year about this time(took him in for an earache)that he has

allergies

> and the Dr. could see his earbone, but they gave him medication and

> left it at that.

>

> My husband is in the military so we move frequently. We just moved

> about 2 months ago and my son had to have a physical for school. I

> was told his left ear had a wax build up and would need to be

> flushed. I took him in to have his ear flushed and the Dr. wanted

to

> check his right ear again to be sure it was ok.

>

> I was shocked when he told me my son had a hole in his ear. He

> recommended me to the ENT Clinic. I was told by the specialist

> yesterday that he has a Cholesteatoma and would require surgery.

He

> said my son is on the moderate to servere end and needs to be treat

> soon. I could not believe what I was hearing!!

> He was then seen by an Audiologist. On one of the tests it prints

> out a chart and he flat lined(not sure what this test was called)

on

> his right ear. I was told he has almost No hearing at all in his

> ear, his left ear-his good ear, was almost a flat line as well.

They

> claim nothing is wrong with his left. It is funny though, I can

> whisper in my son's right ear and he can hear me just fine.

>

> Anyway, I am being reffered again to another Specialist who

> apparently has more experience with the surgery needed to be done.

> My son has a CT scheduled in about a week and then we should get to

> see the other specialist.

>

> I was also told by the audiologist to bring my younger son,4 yrs

old,

> in to have the hearing tests done for him as well. He has had the

> same problem with ear infections.

>

> I am sure none of this is new to most of you, but I am pretty

> overwhelmed by it all.

>

> I am not wanting my son to have to go thru all of this especially

> since he had a major accident right before he turned 4.

>

> I am looking for more insight, any information would be of a Great

> help.

>

> Sorry to be so long in sharing our story.

[Guest guest]

Hi Candy!

Thank you so much for your response. I think all of this will be

harder on myself than on my son. I am trying to get my husband to

read up on it all as well. He just keeps telling me to focus on the

positive and not the negative. I am trying, but it is hard at times

to do.

Once again, thank you for the info! I will add it to the rest of my

research findings.

> > Hi, I am . My 6 yr old was just diagnosed with a

cholesteatoma

> > yesterday.

> > I have been trying to find all I can about it.

> > He had frequent ear infections as a baby/toddler. I was told

last

> > year about this time(took him in for an earache)that he has

> allergies

> > and the Dr. could see his earbone, but they gave him medication

and

> > left it at that.

> >

> > My husband is in the military so we move frequently. We just

moved

> > about 2 months ago and my son had to have a physical for school.

I

> > was told his left ear had a wax build up and would need to be

> > flushed. I took him in to have his ear flushed and the Dr.

wanted

> to

> > check his right ear again to be sure it was ok.

> >

> > I was shocked when he told me my son had a hole in his ear. He

> > recommended me to the ENT Clinic. I was told by the specialist

> > yesterday that he has a Cholesteatoma and would require surgery.

> He

> > said my son is on the moderate to servere end and needs to be

treat

> > soon. I could not believe what I was hearing!!

> > He was then seen by an Audiologist. On one of the tests it

prints

> > out a chart and he flat lined(not sure what this test was called)

> on

> > his right ear. I was told he has almost No hearing at all in his

> > ear, his left ear-his good ear, was almost a flat line as well.

> They

> > claim nothing is wrong with his left. It is funny though, I can

> > whisper in my son's right ear and he can hear me just fine.

> >

> > Anyway, I am being reffered again to another Specialist who

> > apparently has more experience with the surgery needed to be

done.

> > My son has a CT scheduled in about a week and then we should get

to

> > see the other specialist.

> >

> > I was also told by the audiologist to bring my younger son,4 yrs

> old,

> > in to have the hearing tests done for him as well. He has had

the

> > same problem with ear infections.

> >

> > I am sure none of this is new to most of you, but I am pretty

> > overwhelmed by it all.

> >

> > I am not wanting my son to have to go thru all of this especially

> > since he had a major accident right before he turned 4.

> >

> > I am looking for more insight, any information would be of a

Great

> > help.

> >

> > Sorry to be so long in sharing our story.

[Guest guest]

Hi ,

I know how you feel, my son was also diagnosed at 6, he is ten now. He was plagued with constant ear infection as a baby. I don't think I have a picture of him where he doesn't have an infection. In all his baby pictures, you can see his dull, red eyes. Now, his eyes are bright and the infections are finally gone!!! The good news for your son is it has finally been diagnosed and now will be removed. Everyone has stories about how slow the professionals were to diagnose this thing. Another piece of good news is that you found this site. It is a great place to get answers and comfort. I wish I had this site when my son was 6.

When he has surgery, they will probably cut behind his ear. It's a large incision since they basically flip his outer ear forward to access the middle ear. You will want to learn all you can about the anatomy of the ear so that you can ask pointed questions to the surgeon. Try to find an Otologist for your son since they are specialists in the ear. After surgery, your son's ear will probably stick out a lot but it will eventually look normal again. It takes about 6 months. Nobody really explained this to me. I was horrified that I would have to take him to a plastic surgeon to fix his ear but it turned out fine.

Reading peoples stories, this is definetely easier on the younger ones. Your son will bounce back quickly. The first 24-48 hours after surgery, there is pain but he will be ok quickly.

I know you don't want your son to have to go through this but it must be removed because it will keep growing. Hang tough mom and remember that you are not alone in this. Keep us posted

Dorothy

New Member - 6 year old son just diagnosed

Hi, I am . My 6 yr old was just diagnosed with a cholesteatoma yesterday.I have been trying to find all I can about it.He had frequent ear infections as a baby/toddler. I was told last year about this time(took him in for an earache)that he has allergies and the Dr. could see his earbone, but they gave him medication and left it at that.My husband is in the military so we move frequently. We just moved about 2 months ago and my son had to have a physical for school. I was told his left ear had a wax build up and would need to be flushed. I took him in to have his ear flushed and the Dr. wanted to check his right ear again to be sure it was ok.I was shocked when he told me my son had a hole in his ear. He recommended me to the ENT Clinic. I was told by the specialist yesterday that he has a Cholesteatoma and would require surgery. He said my son is on the moderate to servere end and needs to be treat soon. I could not believe what I was hearing!!He was then seen by an Audiologist. On one of the tests it prints out a chart and he flat lined(not sure what this test was called) on his right ear. I was told he has almost No hearing at all in his ear, his left ear-his good ear, was almost a flat line as well. They claim nothing is wrong with his left. It is funny though, I can whisper in my son's right ear and he can hear me just fine.Anyway, I am being reffered again to another Specialist who apparently has more experience with the surgery needed to be done. My son has a CT scheduled in about a week and then we should get to see the other specialist.I was also told by the audiologist to bring my younger son,4 yrs old, in to have the hearing tests done for him as well. He has had the same problem with ear infections.I am sure none of this is new to most of you, but I am pretty overwhelmed by it all.I am not wanting my son to have to go thru all of this especially since he had a major accident right before he turned 4.I am looking for more insight, any information would be of a Great help.Sorry to be so long in sharing our story.