2 year old

[Guest guest]

Our two year old has a congenital c'toma and is scheduled for his

first surgery on the 16th of May. The doctor said the CT scan showed

the it pretty much fills the middle ear and extends into the attic

close to his skull. He said he probably would have to take out the

bones if not destroyed and put them back in a year. If the bones are

removed can you still hear at all? Do we need to keep him from

running around after surgery and for how long? I would love to hear

from other parents with small children who have gone through this.

Also yesterday he was holding his head behind his ear say " Head hurt "

Can this be pain from this c'toma?

Thanks,

[Guest guest]

Hi ,

I don't have any answers for you but I think it's interesting that

we're in the same boat. Our 2 year old has the same diagnosis and

also has surgery May 16th. After his hearing test we were told he has

a 50% hearing loss in the ear with cholesteatoma. We are hoping that

will be regained but we don't meet with the pediatric otologist until

May 15th since we live so far away so don't really know what to expect

except what we read on this site.

We'll be thinking of you... and praying too.

Becky

>

> Our two year old has a congenital c'toma and is scheduled for his

> first surgery on the 16th of May. The doctor said the CT scan showed

> the it pretty much fills the middle ear and extends into the attic

> close to his skull. He said he probably would have to take out the

> bones if not destroyed and put them back in a year. If the bones are

> removed can you still hear at all? Do we need to keep him from

> running around after surgery and for how long? I would love to hear

> from other parents with small children who have gone through this.

> Also yesterday he was holding his head behind his ear say " Head hurt "

> Can this be pain from this c'toma?

>

> Thanks,

>

>

[Guest guest]

HI - my 5 yo son had surgery for a congenital c-toma 3 weeks

ago. I can't answer most of your questions- they are very good ones

for his surgeon, but I can share our experience. After the surgery, I

kept my son out of school for 3 weeks. For the first couple of days,

his ear was pretty tender, and he was content to take it easy, but

within a few days he was back to himself, and I had to constantly

remind him about not running and jumping, sleeping on his good ear,

etc.. While the extra vigilance was kind of a hassle for both my son

and me, I was grateful that he had such little pain that he felt he

could do his normal activities. He's still not crazy about the

incision cleaning and ear drops, but it's become routine.

As far as his hearing goes, we'll see an audiologist in 2 weeks, but

I've observed that he has more difficulty localizing sound

(determining what direction it is coming from) and monitoring the

volume of his own voice. The ossicles are still in his middle ear,

but the c-toma damaged them and the " chain " is not intact. Other than

that, he only seems to have the " selective hearing loss " that is so

typical of 5 yo's!

Overall, my son's first experience with surgery wasn't too bad, which

is fortunate since he will have a second look surgery in the fall. I

recommend writing down your questions, so you won't forget them in the

worry of the surgery day (as I did!). Load up on zip up pajama's,

good movies, and fun little treats to keep him occupied. Good luck!

erin

>

> Our two year old has a congenital c'toma and is scheduled for his

> first surgery on the 16th of May. The doctor said the CT scan showed

> the it pretty much fills the middle ear and extends into the attic

> close to his skull. He said he probably would have to take out the

> bones if not destroyed and put them back in a year. If the bones are

> removed can you still hear at all? Do we need to keep him from

> running around after surgery and for how long? I would love to hear

> from other parents with small children who have gone through this.

> Also yesterday he was holding his head behind his ear say " Head hurt "

> Can this be pain from this c'toma?

>

> Thanks,

>

>

[Guest guest]

Hi ,

My son was diagnosed when he was 3, so maybe my experience can help.

Although, I can tell from the emails on this list that the procedure

has changed some even in just the last few years. My son is 10 now and

had his first surgery just after he turned 4, and his last(!) when he

was 6.

First, I would definitely mention the pain behind the ear to your

doctor. My son had pain, too, as he waited for surgery. But he was

never specific about where it was...I assumed it was pressure against

the ear drum, but now given what your son said, I don't know. Anyway,

the doctors said ctoma didn't grow so fast to speed anything up as

long as tylenol could handle the pain. So, I began carrying children's

tylenol around in my purse and gave it to him when he had pain. By 2

weeks before surgery, he was telling me about pain every 4 hrs as the

tylenol wore off and he was taking it all day. Thankfully, a short-

lived phase.

His bones were destroyed by the ctoma, so I don't know anything about

the docs using his own bones to reconstruct.

They did tell us to keep him from running around after surgery and

this was pretty tricky. This was MORE important after a recontruction

surgery though, than just after a removal. I think after the

reconstruction, we had to keep him from jumping for TWO WEEKS! Imagine

the agony for us. But after the removal, it was really not much. Once

he felt better, he was out riding his bike, no problem.

Some other things... one there is a great tendency to underestimate

pain in children. My son suffered a lot as a result and I made SURE he

got pain meds after all subsequent surgeries whether they thought he

needed it or not. Be sure to discuss this issue with your doctor..

yes, they told me all about how there was so little pain with this

surgery, too, kids normally don't need pain meds, blah, blah... not

true for my son AT ALL.

Another thing...kids often wake from anesthesia crying and screaming.

IN my son's case, he articulated the problem to me later. He told me

he was terrified because he wanted to wake up but he could not. I

explained that this is how the anesthesia medicine wears off. It wears

off a little and he feels like he wants to wake up, but can't yet.

Wears off a little more, then he starts to BE ABLE to wake up. For

subsequent surgeries, I always reminded him just to be patient...there

would be a point where he would want to wake up, but wouldn't be able

to, just wait...and you will wake up and I will be there the whole

time. This REALLY helped him and he never cried in that anesthesia fog

again. Don't know if this will help your son as he is so young, but

maybe worth a try?

Be fully prepared for throwing up in the car on the way home. The

motion really can get to them after a middle-ear surgery AND

anesthesia does that to some people, too. You want a button shirt

(don't take anything that goes over his head). We always have a pillow

in the car for the way home. I sit in back with him, with a seat belt

on him but he lies across the back seat with his head on the pillow in

my lap. Dad drives carefully. Not as safe as the car seat, but MUCH

more comforting, less painful, better prepared for vomit, etc... you

have to make your choices on that one.

Good luck.

Marie

2

>

> Our two year old has a congenital c'toma and is scheduled for his

> first surgery on the 16th of May. The doctor said the CT scan showed

> the it pretty much fills the middle ear and extends into the attic

> close to his skull. He said he probably would have to take out the

> bones if not destroyed and put them back in a year. If the bones are

> removed can you still hear at all? Do we need to keep him from

> running around after surgery and for how long? I would love to hear

> from other parents with small children who have gone through this.

> Also yesterday he was holding his head behind his ear say " Head hurt "

> Can this be pain from this c'toma?

>

> Thanks,

>

>