RE: 5 Year Old Son Diagnosed Monday

[Guest guest]

Quoting krlars2 <krlars2@...>:

> The ENT diagnosed a ctoma after looking in his ear for about five

> seconds. He is scheduled for a CAT scan Monday. I was sort of suprised

> that the doctor diagnosed after only looking in his ear for five

> seconds. Is that normal?? We'll know more about the diagnosis and what

> type of surgery he is proposing after the CAT scan.

That's how fast I got my diagnosis, once I found someone who knew what they

were doing.

> The doctor also was really matter of fact in discussin the surgery.

> I took this the wrong way and assumed it was not really a big deal.

> I was picturing an out patient procedure on a Friday, with my son

> back in school by Monday. It is looking like this is not the case.

> I don't know how far out the surgery will be scheduled, but I'm

> guessing hockey will be out of the question!!

CT scans are notoriously poor at diagnosing c-toma. It's hard to determine

what is cholesteatoma and what is fluid since they look so similar on CT.

Sometimes the ossicles (hearing bones) can't be identified as missing or

not, they can look hidden by the c-toma. Also, the extent of the procedure

actually won't be known until the surgeon gets in there and starts removing

the growth. This Monster is notoriously sneaky.

The surgeon was probably matter-of-fact for several reasons, including that

it's all in a day's work for him (but not for us) and he wants to be as

reassuring as possible to you. It would *not* help anybody if he looked

into your child's ear and shrieked " OH MY GOODNESS " ;-D, not that he felt

that way anyway.

> I'd appreciate any feedback from anyone as to what questions I should

> be asking the doctor and expectations as far as recovery goes. I'm

> still trying to read up on this and get all my tomas and otomies

> down. I'm planning on him being gone from school for at least a

> week. I have plenty of leave and hopefully my boss will be willing

> to let me work from home.

It has been very beneficial for the kids on the list facing surgery to have

a preop tour of the hospital. You might want to see if that's available.

> Cris has been dealing with this very well. He's a little scared of

> the idea of surgery-- mostly the getting cut part. But he matter of

> factly talked to his grandmother on the phone about it-- he said he

> has a piece of skin growing behind his eardrum and the doctor was

> going to do an operation to get it out. He also isn't upset about

> the hearing loss either-- he told the school nurse that " I can't hear

> in my left ear, that's just the way God made me. " Hopefully the

> surgery will improve things on that end.

At his age, he may very well have a congenital c-toma and his current level

of hearing is all he can remember. Ask about later reconstruction if any

of his ossicles are compromised. Kids learn so much by hearing, so even

though he may be facing another surgery not too far down the road, it may

be worth it.

> Any input people can provide would be great. It is great to see so

> much interest and support. I hope that I will have a positive story

> to share with others in the future.

>

> Thanks,

>

>

Glad you're here, sorry you need to be. This is a terrific list and you'll

learn so much here.

--

Diane Brunet

http://www.sassysuds.com

[Guest guest]

Hi ,

I'm glad you found this site. It is not uncommon for an ENT to diagnose within

minutes of seeing the ear. This happened to my son after being treated by a

pediatrician for earwax for two years. You may want to check your area for an

otologist, this is an ENT who has completed a two year fellowship training in

ear surgery. Either way make sure the surgeon is very experienced and does

several (8 to 10) of these surgeries on a monthly basis. Children tend to bounce

back from surgery quickly, much better than the parents. This is a great group

to get information from. My best to you and your son.

Audrey

[Guest guest]

Hi

Welcome to the group and I'm sorry you needed to be here. This is a great

and supportive group who will all work to answer any questions you have.

Here's my part.

The ENT

>diagnosed a ctoma after looking in his ear for about five seconds.

>He is scheduled for a CAT scan Monday. I was sort of suprised that

>the doctor diagnosed after only looking in his ear for five seconds.

>Is that normal??

My ENT diagnosed it just as fast. He then had a CT done to confirm it and

to see some of it's extent. The CT often doesn't show the full extent of

the C-toma. Surgeries are often longer than predicted so be prepared to wait

longer.

How long your son will be out of action will depend on the extent of the

surgery and his recooperative ability. Kids bounce back really fast! The

time up to the surgery, the surgery and the recovery will probably be much

harder on you than on him. I think planning on him being out of school for

a week is a good plan. Ask the doc to make sure.

I sounds like Cris is handling it very well. That he's scared of being cut

is no surprise but you can encourage him in that he will be in a special

sleep when it happens and he won't feel them doing it.

Surgery may or may not improve his hearing depending on how much damage has

been done but there is often the possiblity of reconstruction (which I've

had done).

I'm sure others will pipe up as well. Ask all the questions you want - we

are all here for each other.

Jane

_________________________________________________________________

Let the new MSN Premium Internet Software make the most of your high-speed

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[Guest guest]

Hi, ,

About this time last year, my 4-year-old daughter was diagnosed with a

congenital ctoma, and had surgery in July. She bounced back very

quickly (the hard part isn't the child's recovery, it's keeping them

still!), and is fine now. She has hearing loss in the affected ear, but

we're scheduled for a " second look " surgery in April or May. Also, I've

got a unique perspective on this, as I had a congenital ctoma as a

child, but mine wasn't found until much later (I was 8 or 9), and so the

damage was much more extensive.

The CT scan helps the surgeon better judge the size and placement of the

ctoma. My daughter's was estimated by CT scan to be about 7 mm in size,

and turned out to be 11 mm or so - but the surgeon was able to see

before the operation that it had " turned a corner " and was going to be

more difficult to get out. Knowledge is power, and the surgeon was

prepared for this ahead of time. However, everyone else's comments to

date are spot-on - the CT scan isn't a very useful diagnostic tool, and

won't tell the surgeon the extent of damage (if any) to the ear bones

(aka ossicles).

As for physical activity - we were told my daughter was not to do

anything jarring (jump, bounce, skip, run) for 2 weeks, and then no

heavy physical activity where jarring could occur (football was the

example used) for another 6 weeks - so hockey, I'd guess, is right out.

But ask. The hardest part for us was that my daughter felt so good, so

NORMAL, that she was running, jumping, and bouncing as usual for a

4-year-old, and we had to calm her down.

Be prepared for the surgeon to discuss a second operation, called a

" second look " and usually scheduled between 6 and 9 months after the

initial operation. Ctomas are notorious for coming back, and the second

look surgery allows the surgeon to catch it faster if it does come back.

You should start talking to your son about this now. Also, you should

talk (in a very hypothetical sense at this point) about possible

reconstruction operations. In my own experience, I was never told about

how this could be a series of operations - I was just told about each

one, one at a time. I ended up having SEVEN operations, and each one

was more emotionally traumatic to me than the last, because I always

felt that THIS one was the last one, and it wasn't.

Questions I would ask (and did, for my daughter):

1. Is this a congenital ctoma, or an acquired one? This is important,

as acquired ctomas are more likely to recur. A congenital ctoma is

caused by a stray skin cell behind the eardrum (this is the type both I

and my daughter had). An acquired one is caused by poor eustacian tube

function or other structural issue that causes the eardrum to be pulled

in, causing a " retraction pocket " that becomes the ctoma. These recur

because the underlying conditions are difficult to correct, so the

eardrum keeps creating retraction pockets.

2. How many ctoma surgeries has the doctor performed? Choose your

timeframe (X per month, X per year). Also ask about success rates - how

many patients had severe hearing loss? How many were able to have the

hearing loss corrected?

3. Another important experience question - ask the surgeon about the

number of CHILDREN he operates on. There are special challenges facing

a surgeon dealing with kids, the most significant of which is the size

of the space he's working in. I was told by several surgeons that a

pediatric ontologist is the BEST surgeon for the job, as he's got the

ontology experience (he's not just an Ear-Nose-Throat guy, but an ear

specialist) AND he's got the experience needed for children's special

needs.

4. Can the doctor recommend other surgeons for second opinions? This

isn't so much a second opinion on whether surgery is needed - there is

no cure for ctoma but an operation. It's more to compare experience. I

settled on a surgeon (recommended from this list!) when he told me " I no

longer read papers and studies about ctoma; I write them. " I

interviewed five surgeons, and was comfortable with all of them, but

this helped me feel I'd done my job as a parent.

Having been both a patient and a parent of one, I feel I know this

disease pretty well, and I can tell you - your son will be fine in the

long run. My initial surgery was 25 years ago, and my last

reconstruction was 15 years ago. Techniques and technologies have come

a LONG way since then, and I feel that my outcome was pretty good, so

your son's (and my daughter's) outcome will be that much better.

If you've got any other questions, feel free to ask me either in the

group or directly. This is a GREAT group and resource, and helped me

get facts and opinions that steered my daughter's treatment in the right

direction.

Best of luck to you and your son.

-Jeff.

5 Year Old Son Diagnosed Monday

Hello Everyone,

I'm new. My son Cris was diagnosed with a ctoma Monday. (glad you

all use an abbreviation, my husband asked how to spell cholesteatoma

and I got about three letter in before a gave up!!) He failed two

hearing screens at school in the fall. Then failed a more

comprehensive hearing screen at the scottish rite clinic on the

University Campus in our city. We then went to our family

practitioner who said he had fluid behind the eardrum, but it wasn't

infected. She refered us to a ENT who he saw Monday. The ENT

diagnosed a ctoma after looking in his ear for about five seconds.

He is scheduled for a CAT scan Monday. I was sort of suprised that

the doctor diagnosed after only looking in his ear for five seconds.

Is that normal?? We'll know more about the diagnosis and what type

of surgery he is proposing after the CAT scan.

The doctor also was really matter of fact in discussin the surgery.

I took this the wrong way and assumed it was not really a big deal.

I was picturing an out patient procedure on a Friday, with my son

back in school by Monday. It is looking like this is not the case.

I don't know how far out the surgery will be scheduled, but I'm

guessing hockey will be out of the question!!

I'd appreciate any feedback from anyone as to what questions I should

be asking the doctor and expectations as far as recovery goes. I'm

still trying to read up on this and get all my tomas and otomies

down. I'm planning on him being gone from school for at least a

week. I have plenty of leave and hopefully my boss will be willing

to let me work from home.

Cris has been dealing with this very well. He's a little scared of

the idea of surgery-- mostly the getting cut part. But he matter of

factly talked to his grandmother on the phone about it-- he said he

has a piece of skin growing behind his eardrum and the doctor was

going to do an operation to get it out. He also isn't upset about

the hearing loss either-- he told the school nurse that " I can't hear

in my left ear, that's just the way God made me. " Hopefully the

surgery will improve things on that end.

Any input people can provide would be great. It is great to see so

much interest and support. I hope that I will have a positive story

to share with others in the future.

Thanks,