Re: Re: Worried About Cholesteatoma Surgery

[Guest guest]

I had a lot of ear discomfort for years. I'd go to my primary care

physician and they'd exclaim - " Wow! That's a really infected ear. Get

this prescription and it will feel better. " It would ... for maybe a

month or so. I kind of got used to it feeling bad. For me, it was the

hearing loss that finally got me past the primary care physician (PCP)

to a good ear clinic. I inherited a pair of speakers for my computer in

the workplace about 11 years ago and thought the one was broken ...

until I turned my head. I realized I couldn't hear much of anything out

of my right ear. I went back to the PCP and they put me on antibiotics

.... AGAIN ... but this time no hearing came back.

My PCP was friends with an ENT at the Eye and Ear Institute of

Pittsburgh that really specializes in rhinology. She spent just a few

minutes looking in my ear and muttered something about she was fairly

certain she knew what was up and that she was going to get a second

opinion. Maybe she didn't mutter, but at that point everybody seemed to

be muttering, eh? She left and came back with who was to become my

neurotologist. He looked in my ear for a few seconds and said " Yup! "

Then they quickly told me I had a benign growth in my ear that had to be

surgically removed. THAT I heard. At least I understood the word benign

.... but surgery on my head!!! I was a bit numb when they plopped me down

at some poor girl's desk to schedule the surgery and she could tell

after about a minute that I hadn't really come to grips with stuff. She

brought the doctors back and they did their best to explain what was up.

I resigned myself to the fact that I had to do this. Yes, it was scary,

but at least in my case, the anxiety was far worse than the operation.

I drove home and spilled the news to the wife-inator - she freaked! She

was on the phone to the doctor's office demanding to know what was up. I

don't think I relayed the initial message particularly well. :-) To his

credit, my neurotologist met with my wife and I and she was so impressed

with his professionalism. I just wanted outta there.

Like this last post, my surgery lasted much longer than the original

plan What should have lasted the morning wound up with us being the last

to leave that day ... er ... night. My post-surgical experience was ...

let's say challenging. For me the pain wasn't so bad. The initial bout

of nausea wasn't too bad. The head bandage came off the next morning. I

was feeling really good by the second night, but then I guess I let

myself get dehydrated and went on a four day bout with nausea. So, keep

yourself well hydrated. You'll have either gauze or gel packing in your

ear, so don't expect to be able to hear right away. You also might not

have reconstruction of your hearing bones right away. That may come in a

second operation.

Note that the primary goal of the operation is to establish a clean, dry

ear. Reestablishing hearing is a secondary goal, unfortunately.

Thankfully I think they have to tell us that to cover their butts. They

can do amazing things and have an array of options to help you regain

your hearing. I have an artificial bone in my right ear and it's amazing

- like many of the stories about the kids that we read, I was somewhat

comforted by being 'bionic.' My left ear has reshaped hearing bones

(yeah, they found cholesteatoma there too). It doesn't work so well, but

we're not doing anything about it unless I have another surgery. I wear

hearing aids in both ears - but thats mostly due to sensorineural

hearing loss that I also apparently have. With all the electronic stuff

people wear on their heads these days, I doubt anyone will notice if you

have to wear hearing aids.

Post-operative care instructions are really important and I'd insist on

having them written - after all, that hearing thing isn't actually

happening for us at that point - and we're a wee whacked out from the

surgery. Note that the instructions can vary from patient to patient and

surgery to surgery. I've been through this three times and the care was

different each time.

This is usually considered minor surgery and we shouldn't get too

anxious, but that's easier said than done. I certainly hope your

situation winds up on the more minor end of the spectrum. Best wishes.

Matt

smharvey68 wrote:

>

>

> Hi,

> This is my first post/reply on this site so I hope I am doing it

> right. I am a 42 year young female and was diagnosed with a

> cholesteatoma from chronic ear infections as well. They removed the

> mass which was larger than they expected by making an incision behind

> the ear. I also had severe hearing loss prior to the surgery. It took

> about 2 weeks for recovery....within a day I was up and about but

> painful for about a week. The mass destroyed my ear bones and ear drum

> of which the ear drum was reconstructed during the surgery and the ear

> bones will be replaced through a second surgery in approximately 3

> months. After the first surgery I had more loss of hearing due to the

> lack of bones, but I am expected to have almost full hearing after the

> second surgery. The bottom line is I no longer have vertigo and I feel

> a lot better after the first surgery.

> The total surgery time for me was longer than expected, about 5 hours,

> and I ended up staying overnight in the hospital.

> After reading many stories on this site, my conclusion is the most

> important factor is to use the best surgeon possible. I did a lot of

> research on mine, and feel confident there will not be any future

> consequences.

> I wish I would have had the procedure done years ago but unfortunately

> it takes an expert to find the underlying cholesteatoma.

>

>

>

> >

> > I am 23 years old and I was just recently told that I had a

> cholesteatoma. I have had chronic ear infections since I was a child,

> and no one told my parents about the options of tubes. I have hearing

> loss due to the chronic ear infections, and I'm worried about how this

> surgery can affect my hearing. I was told about the Shea Clinic in

> Memphis, TN. I was told they could do a great job in removing the

> growth. I am very worried about what this might do to my hearing. I'm

> a worrier in general, so having this surgery is really freaking me

> out. I know it's a big deal, and I should be a little concerned. I'm

> just needed some people who have had this experience first hand to

> tell me what it is like.

> >

>

>

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