10 yr old with congenital C-toma

[Guest guest]

I just found this group & thought I'd post my son's history & a couple

of questions I have.

My son Zack had tympano-mastoidectomy 5 days ago. He's recovering

well, with hardly any pain. His first 2 middle ear bones are gone. One

practically disintegrated at the surgeons touch & the other broke off

easily while cleaning C-toma off of it. This was his first surgery for

it but the Dr feels that his C-toma is congenital because it was so

advanced, incl in the top part of the Eustachian tube as well as where

the cyst was located & the advanced C-toma that he thinks would take

many years to develop this far.

We had very few signs that this was there other than increasing

hearing loss (both ears with the right worse) & then drainage when he

got major perforations in his ear drums. He had maybe 2 infections per

year & they were assumed to be normal childhood ear infections &

treated with antibiotics. His left ear is infected now & he is on the

3rd round of meds/drops & it is not clearing up so the DR thinks he

probably has C-toma in his left ear as well.

My biggest concern is that I can't imagine him (and us) going through

many surgeries to get rid of this! Not only the financial aspects,

since we are not well off & will probably be making pmts for 2 yrs

just for this surgery but the trauma of going through surgery after

surgery, is shocking. I just can't fathom going through this so much

over the years. The surgeon said he wants to do a bone replacement

in 6-8 months & see if there is any leftover C-toma.

Which leads to my questions about what to do about his hearing?

My boy has a severe hearing loss in his right ear. Without bones I

imagine it is worse now. I'm not sure they'll even test him again soon

because without those hearing bones, there is probably no conductive

hearing. His left ear is a mild-moderate hearing loss. All the hearing

loss is conductive. His bone conduction is great thus far, so this

hasn't affected his sensorineural hearing.

School is out until late August but during the last few months of last

school session, his hearing had deteriorated greatly so the Dr did

hearing tests & wrote a note for school. The teacher was supposed to

put him in the front of the classroom & make eye contact with him when

she was talking to him.

To me that seems about as effective as putting a band-aid on a wound

the size of TX!

We have already seen his grades starting to drop this past school yr.

In Aug he'll start 5th grade, it will be tough since are getting them

ready for middle school. He went from A's to B's with a low C in

reading (which the Dr said is related to hearing loss).

So what is he supposed to do for 6 months with such a major hearing

loss? I hate putting a " stigma " of hearing aids, which hasn't even

been mentioned by the Dr yet (our post op appointment is in a few

days) but I also don't want him to walk in front of a car he doesn't

hear & get hurt or start failing in school which might affect the rest

of his school years.

I wear aids due to inherited Oto disease affecting my conductive &

nerve hearing & I know the ups & downs of hearing aids but I am very

concerned about son going 6-9 months with such a hearing loss & not

doing anything to help him while he waits for surgery which may or may

not restore his hearing.

Have any of you been facing this type of problem between surgeries

with loss of hearing? Son can't become a hibernating bear under my

protection for 6-9 months, especially when he is not at home. I know

I'm a worrier...it is mother in me lol....but I have even been

worried when he spent the night at friends homes .... will the other

child's mom remember ds can't hear very well if they go to Mcs

or the park? Will his teacher remmeber that she needs to look at ds

when she's telling the class how to solve problems & will he

understand what his classmates are learning? At home the past 3 months

he didn't have any idea what to do on his homework half the time. It

was like he wasn't there sometimes.