What do you think? Signs of Cholesteatoma???

February 27, 2006

Hello All,

I have an appt. for my son with his ENT tomarrow & I'm trying to do

all the study that I can to make my case for having a CT scan done

on my son. The last time we were in to see the ENT, he " poo-pooed "

my concerns that perhaps something more serious than just another

ear infection was going on.

I would be most grateful to any of you who would be willing to read

over this list of symptoms my son has and give me your opinion of

whether you think the symptoms are consistant for cholesteatoma or

something else. Thank you so much!

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SOME BACKGROUND AND HIS SYMPTOMS

~My son is 16 years old, big (not overweight), strong and otherwise

healthy. Very good immune system. Usually the last one in the family

to get sick, if at all. We homeschool so his exposures to colds and

germs is not as great. We eat a healthy diet.

~He's never had even just a mild ear infection until age 12 or 13.

~Since then, ear infections have been re-ocurring regularly,

becoming more prolific in this past year or so.

~Can effect either side.

~LEFT side seems to be most problematic.

~One doctor has said that he has shorter ear canals and will have a

harder time than most people keeping ears free of build-up however,

a specialist noted that although he does have shorter ear canals, he

felt they weren't that much shorter that it'd make any difference.

~When infections flare up his sympotoms are : pressure and pain,

impaired hearing and nerve pain in the ear, redness and swelling

sometimes so great that the jawline and side of his face will be

sore and swollen, too.

~When his ears are cleaned by the doctor the wax is impacted (even

though he is careful with the use of Q-tips) and can be troublesome

to get out.

~Wet lavages have worked but then result in a swimmer's ear

infection; we don't allow wet lavages any longer.

~Last cleaning was by " vacuuming " at the ENT's office. He said that

it was an outer ear infection, culture was negative for fungus. The

ear was black through the otoscope. My son was given strong anti-

bacterial drops and within a week, the infection cleared. The ENT

did not think any further checking or testing was warranted. He said

if the infection comes back to just begin the drops again.

~Since that appt., we began ear candling to try to keep infections

away.

~An infection was building again last week so I candled my son's

ear. He said the pressure was relieved about 90% as the draining

began that evening. From that time until last night (4 days), he has

been getting blood, brownish material, and black with whitish

material coming out. It's mostly been black stuff that comes out on

the Q-tip. Sometimes, he can actually feel something " breaking

loose " or coming down and he knows when to get a Q-tip and get it

out.

~There is an odor to the drainage.

~Hearing is diminished in left ear.

~In the past few months, while playing basketball, he has

experienced several occasions of a sudden onset of general weakness.

This doesn't happen every time - just a few times.

~Experience lightheadedness but NOT a vertigo type experience.

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I spoke to the ENT's office today and they are fitting him in

tomarrow to be rechecked, however they are already indicating that

they won't order a CT for an outer ear infection. I suggested that

perhaps it's not only an outer ear infection and that there may be

something more going on that warrants closer look. They were

hesitant but said to come in for the recheck anywise.

Thank you VERY MUCH for any information you can send my way. I was

so glad to find your group!

Blessings,

Luanne

February 27, 2006

I would say get to another ENT. He has a lot of symptoms, although, if this

happens in both ears there may be something going on other than c'toma. I

would try to get a second opinion. There is obviously something going on

other than the basic ear infection. Have they tried placing tubes in his

ears? My son had an outer ear infection for 4 months, we treated with a

number of antibiotics and it would never go away. Finally saw and ENT that

decided something else was going on. We saw about 6 different docs over that

4 months before we found one that did a CT scan. If you could even get them

to try tubes, it would at least get a surgeon in there to look more closely