10 yr old Son w/ Ctoma

[Guest guest]

Hello everyone,

I've been an avid reader of this group since July, but this is my

first post. I need to thank you all for sharing your experiences

and knowledge. You have helped me more than you know.

After reading the recent postings from other moms of children with

cholesteatomas, I feel it's my turn to share.

Our 10 yr old son, Connor, was diagnosed with a ctoma after a CT

Scan on 7/12/07. He had no symptoms other than a flat tympanogram,

a feeling of fullness in his ear, and finally a mild-moderate

hearing loss of 30-40 decibels. Ironically, his hearing loss wasn't

that bad even though the ctoma had already destroyed at least 2 of

the 3 hearing bones. They think the mass of the ctoma itself was

conducting the sound waves to the inner ear!

He had surgery on 8/17/07 by Dr. Luxford of the House Ear Clinic.

The surgery was scheduled for 2-2 ½ hours, but went 3 hrs due to the

extensive damage. During surgery they found that the arch of the

stapes (3rd hearing bone) had also been destroyed, and the boney

channel protecting the facial nerve had started to erode, partially

exposing it. The good news is the facial nerve wasn't damaged, and

his recovery has truly been amazing.

I feel strongly that his recovery is a testament to the talent of

his surgeon. For those of you with pending surgeries, please see an

experienced, skilled Otologist – not an ENT.

Connor was discharged that same day, and was on Tylenol for maybe 2

days post-op. For the 1st post-op day, the gauze head wrap made him

look like a Confederate War head trauma victim. We removed that the

following day, which made him much more comfortable.

I bought a `wedge' pillow to elevate his head when sleeping; he used

it for only 2 days.

I bought him several button up shirts so he wouldn't need to pull

anything over his head; he only wore 2 of them before he decided he

was just fine with his standard t-shirts.

My husband and I both took a week off work to care for him. It

turned out I needed the time off more for my own recovery from his

surgery. It was a challenge to keep him quiet and resting the whole

time!

He was definitely ready to go to the 1st day of school 12 days

later, and he was at soccer practice 2 weeks post-op. He wasn't at

100%, but he was determined. Make sure your kids get enough

opportunity to rest, and I think you will be delightfully surprised

at how quickly they bounce back.

He has no hearing in his right ear now, but he says it's really more

of an annoyance than a big problem. He is just focused on the

belief that his hearing will be restored during his next surgery in

the spring.

I hope this helps. Marilyn said that the anticipation of the

surgery was worse than the recovery. I couldn't agree more.