Re: son's hearing - worse and then better?

[Guest guest]

Hi,

Is it possible that the cholesteatoma may have grown back and is

helping his ear hear better?

-Millie

[Guest guest]

I thought about that, but it would be awfully fast for it to have grown back, plus it's weird that both the right and left ears improved at the same time. There was never cholesteatoma in the right ear.

[Guest guest]

I don't have a good answer about your son's hearing but have a simalar

odd experience. My daughter suddenly got her hearing back three years

after her first surgery. Her ctoma was back. The funny thing is that

when it was removed in April, the doctor said it had disolved all of

her hearing bones. She now has no hearing bones in her left ear and

her hearing is better than it has ever been (based on observation at

home, no loud music or tv, no more " what? " ). We get her hearing tested

in September. I am really curious to see what is going on.

[Guest guest]

We are new to this group, but our five year old has had nine

surgeries for this in the last two and a half years. She definitely

has times when hearing is better. At the same time, we have twice had

a situation where her particularly aggressive cholesteatoma has

regrown rapidly. This last time, it filled her mastoid in eight

weeks. I don't want to scare you, but if anything else looks odd,

definitely give your stateside doc a call!!!

>

> Hi everyone:

>

> You may remember me - I posted about my son's cholesteatoma in

> January. He's five years old and had his first surgery in January

> and he will have another one in the next few months. The first was

> canal wall up. The cholesteatoma was large - the doctor said on a

> scale of 1 to 10 it was a 10. It destroyed the incus and malleus.

> We're not sure yet if it also destroyed the stapes or not because

> there was so much swelling and infection it was hard for the doctor

> to see. We saw Dr. Tunkel who is the chief of pediatric

> otolaryngology at s Hopkins. We currently live in Bangkok but

> were in the D.C. area visiting when we discovered this whole thing

> with the cholesteatoma - we decided to see a pediatric specialist

> when we were home for the holidays when the ENTs in Bangkok

couldn't

> tell us what was going on with ear infections and granulated tissue

> in the ear canal that wouldn't clear up.

>

> At Hopkins, when they did the surgery on the left ear (the one

with

> the cholesteatoma) they also put a tube

> (grommet) in the right because that ear was filled with fluid and

> they wanted to make sure that his hearing was good as it could be

> since the left ear hears so poorly. That did the trick - he was

> hearing normally out of the right ear after the surgery.

>

> Anyway, we returned to Bangkok but will be moving back to the U.S.

> permanently in July and will continue to see Dr. Tunkel once we

move

> back as we don't live far from Baltimore. He will schedule the

> second surgery once we move back. My question though is about my

> son's hearing.

>

> About 1-2 months ago we had an audiogram as scheduled by our ENT in

> Bangkok. The hearing test was as expected - normal hearing in the

> right ear with hearing in the left ear that was slightly worse than

> before the surgery (no reconstruction was done during the surgery

and

> Dr. Tunkel warned us the hearing might be worse in the left because

> the cholesteatoma itself had conducted sound so once we removed it,

> things might be a bit worse). Basically, he has almost total

> conductive hearing loss in the left ear.

>

> The weird thing is, about a week ago, my son said that his right

ear

> (the normal hearing one) hurt when we put the ear plug in and his

> hearing was noticeably worse - saying " huh " all the time and

blasting

> the tv. I took him to see the ENT in Bangkok who looked in his ear

> and said that the tube was falling out. He recommended that we

come

> back in a week to see if it will fall out far enough for him to

> remove it - at the appointment it was still stuck partway in the

> canal, but was clearly coming out.

>

> My husband and I were very discouraged at the thought that he might

> have bad hearing until we get the next surgery and another tube put

> in as that could be a few months away. So I e-mailed a cousin of

> mine who is an ENT in the U.S. He said that my son might have

fluid

> again in that ear or possibly the ear tube is clogged. He

> recommended that we try a nasal steroid spray and have the ENT in

> Bangkok do a tympanogram at the next appointment to see if there is

> fluid in the right ear. Two nights ago I tried the steroid spray

on

> my son (I happened to have some left over from when he had a sinus

> infection). Twenty minutes later he screamed for me to come into

his

> room - he said he could hear again! Also, I tried the ear plug

again

> and it no longer hurt to put in, so my thought is that the tube

fell

> out. The weirdest thing is that he also claims that his left ear

> (the cholesteatoma one) all of a sudden hears better as well. I

> don't know how this is even possible, but I had him cover up his

> right ear while I did some informal tests (whispering while facing

> away from him, etc.) and, indeed, it did seem like he could hear me

> better from the left ear on things that before he couldn't hear.

>

> I know we have to wait for the next audiogram when we go back to

the

> U.S. in about 6 weeks to confirm whether or not he really hears

> better in the cholesteatoma ear, but in the meantime, have any of

you

> heard of such a thing? Is it possible that there was still some

> residual packing or fluid that cleared out of there? I'm relieved

to

> not have him blasting the tv anymore or saying " huh " constantly,

but

> am just wondering what the heck is going on.

>

> Thanks for your input.

>

[Guest guest]

Thanks - I did know that the aggressive ones can be fast growing, but 8 weeks? That's really scary. My son has no other signs or symptoms, but we already have our appointment scheduled with our surgeon at Hopkins at the end of July a few days after we return to the U.S.. I had asked the doctor after the surgery in January when he told me that he wouldn't do a second surgery for at least 6 months post the first one what would happen if the cholesteatoma grew back aggressively and he told me that he made room in the cavity for it to grow away from stuff it can harm plus it already pretty much destroyed whatever it could have destroyed in a relatively short amount of time so he wasn't too worried about waiting 6-7 months to

see my son again. But I really hope that this isn't the reason that he's hearing better!

[Guest guest]

It was scary, but it didn't do any new structural damage, and all of

our planned surgeries have been at the six month intervals. This was

a really freak thing. The first thing the surgeon told me was that he

had never seen anything like this before!

I don't think you need to worry, especially if you're going back that

soon, but I wanted to make sure people knew that it could happen. We

had definite symptoms that something was very wrong.

It is just such a relief to find a group of people who have even

heard of cholesteatoma!

Good luck with your son!

>

> Thanks - I did know that the aggressive ones can be fast growing,

but 8 weeks? & nbsp; That's really scary. & nbsp; My son has no other

signs or symptoms, but we already have our appointment scheduled with

our surgeon at Hopkins at the end of July a few days after we return

to the U.S.. & nbsp; I had asked & nbsp;the doctor & nbsp;after the surgery

in January when he told me that he wouldn't do a second surgery for

at least 6 months post the first one what would happen if the

cholesteatoma grew back aggressively and he told me that he made room

in the cavity for it to grow away from stuff it can harm plus it

already pretty much destroyed whatever it could have destroyed in a

relatively short amount of time & nbsp;so he wasn't too worried about

waiting 6-7 months to see my son again. & nbsp; But I really hope that

this isn't the reason that he's hearing better!

>