Re: My 7 year old son just had a canal wall down surgery

[Guest guest]

Next month my 6 year old might be going through the same thing on his

left ear. He had a canal wall up procedure last December, but the

cholesteatoma was pretty extensive. He's having the second look

surgery next month, but the surgeon warned us that there is probably

a good chance (maybe 50% or more) that he will have to do a canal

wall down. Basically, if there is more cholesteatoma in there, he

will do a canal wall down - a modified radical procedure. If there

is not, then he will do another canal wall up with reconstruction.

What the surgeon told us is that with a canal wall down, the activity

that our son will never be able to do is scuba diving, however he

will be able to swim. Our surgeon told us that some kids with the

modified radical procedure even do ok swimming without an ear plug if

the water isn't too cold and if they don't swim under the water too

deep, but probably most of the time an ear plug will be required. He

also told us that with the modified radical procedure he would do,

over time as our son grew, the part of the ear canal that was widened

would grow smaller so that by the time our son grows up, the

procedure would barely be noticeable.

On the last procedure, two of the hearing bones had to be removed and

the doctor wasn't sure about the condition of the stapes. The

hearing in that ear is much improved post surgery after the ear drum

was repaired (it's only mild deafness), so the doctor told us that

(hopefully) the stapes is still intact and that it's not

cholesteatoma

conducting sound. The doctor is hopeful that it's the former because

he doesn't see any external signs of cholesteatoma, though of course

it's hard to be sure and I'm worried that if he sees cholesteatoma on

the next surgery, that he will have to damage the stapes (even if

it's still intact) to remove the cholesteatoma, but we won't know

until he goes in there.

I'm sorry to hear about your son's pain. I'm worried about increased

pain for my son too if they have to do canal wall down. You may want

to find out from your son's surgeon whether it was a radical or

modified radical procedure (most likely it was a modified radical

since that is what they always try to do) and make sure they are

giving your son adequate pain killers - they should have prescribed

tylenol with codeine.

From my understanding, the hearing is not necessarily worse with the

canal wall down provided that it isn't cholesteatoma conducting sound

that is improving the hearing and that they didn't have to damage or

take out any of the hearing bone structure during the procedure, but

that sometimes they have to do this in order to remove the

cholesteatoma. They can also do reconstruction to improve hearing,

but usually with kids they don't do this until the ear is

cholesteatoma free for a few years. However, you won't be able to

tell anything for at least a few months after surgery because there

will be packing in the ear that will prevent him from having optimum

hearing.

With canal wall down, he will require probably visits of 2 times a

year for special cleaning and exam in the doctor's office (which

supposedly does not hurt and does not have to be done under

anaesthesia) - possibly for the rest of his life, although as the

canal wall grows bigger when he gets older, it may not have to be so

often. However, even with canal wall up they would want him to come

in frequently to monitor and the slightest sign of cholesteatoma

would require him to go back in for surgery - probably canal wall

down.

When you are googling, make sure you look up " modified radical "

rather than " radical " procedure for canal wall down (assuming that's

what the surgeon did - it's the most likely). The modified radical

procedure has less restrictions and greater chance for improved

hearing outcome than the radical. Good luck! I'm so nervous about

our son's next surgery and know what you are going through.

Best,

Maddy

>

> This is # 3. Due to the information I have gathered from this

terrific

> group, I was able to discuss canal wall up vs. canal wall down

before

> the operation. The surgeon assured me there was just a very tiny

> chance he would go canal wall down. Well, once they got in there, he

> kept discovering little " pearls " all over the place. (I read his

> report yesterday.) So he reversed course, and switched to canal wall

> down. So far the amount of pain for my little boy and blood has been

> much worse than before. I guess this is to be expected? Is there

> anything else that will be different with this recovery? Will he

ever

> be able to go swimming again? Will his hearing be worse now than

with

> the canal wall up? Does this mean he will need a lot more surgeon

> visits to take care of his ear? Sorry for all the questions. I am

> Googling " canal wall down " for info, and a lot of it is conflicting

> and scary. Thank you all so much in advance for any help you can

give

us!

>

[Guest guest]

Hey Maddy!

Thank you so much for responding. His pain is better now, but it is

still bleeding/draining, and the surgery was Wednesday. My surgeon

didn't explain much after the procedure. He just said that a lot of

info on the internet is out of date, and that canal wall down is not

as bad as it used to be. He already did the reconstruction. But he

did the reconstruction last time, too. Only with the first surgery he

didn't reconstruct, because he said the likelihood it would return was

high. We will go back to see him in 10 days. I wish you and your son

the best with your surgery.

> >

> > This is # 3. Due to the information I have gathered from this

> terrific

> > group, I was able to discuss canal wall up vs. canal wall down

> before

> > the operation. The surgeon assured me there was just a very tiny

> > chance he would go canal wall down. Well, once they got in there, he

> > kept discovering little " pearls " all over the place. (I read his

> > report yesterday.) So he reversed course, and switched to canal wall

> > down. So far the amount of pain for my little boy and blood has been

> > much worse than before. I guess this is to be expected? Is there

> > anything else that will be different with this recovery? Will he

> ever

> > be able to go swimming again? Will his hearing be worse now than

> with

> > the canal wall up? Does this mean he will need a lot more surgeon

> > visits to take care of his ear? Sorry for all the questions. I am

> > Googling " canal wall down " for info, and a lot of it is conflicting

> > and scary. Thank you all so much in advance for any help you can

> give

> us!

> >

>