Cholesteatoma/TMJ

[Guest guest]

I had my first surgery on June 5th lost 1st and 2nd hearing bone but

was able to save the 3rd most important bone. Complete

Mastoidectomy. Surgery was 3 hours as well as recovery. My biggest

complaint after surgery was I was unable to talk due to jaw pain. My

Dr said this was normal. After weeks of not eating, awful headaches

and having to talk without moving my jaw I was treated for TMJ. I

have had TMJ in the past but nothing like this. The surgery and the

ordeal itself is bad enought without another problem. Anyway I guess

the moral of this story is if you have had TMJ problems in the past

and expect to have surgery make sure you make your Dr aware that you

have TMJ. When you are intubated they must open your mouth quickly

and wide. My Dr also informed me that special precautions can be

taken during my next surgery. I am still being treated for TMJ by

the dentist. I am on soft diet and can't talk much. I'm sure my

husband doesn't mind that.

I am still coming to grips with the Cholesteatoma. I am very

frustrated with the lack of hearing. Not just the lack of but

sometimes sounds drive me crazy. Sounds like glass dishes. I find

it very difficult in meetings because I don't always hear exactly

what is being said. Eating in a resturant is awful. I always

thought that if you had a problem hearing you just couldn't hear I

never imagined that sound would be so internalized. I don't sing in

the car anymore....I am having the surgery next year to hopefully

replace the missing bones if the cholesteatoma has returned my Dr

will do a Radical Mastoidectomy. So I am not going to get to excited

about getting any hearing back I will just wait and see. I am sure I

sound like I am whinning and I guess I am but I truely feel very luck

it could always be worse. Also I turned 42 on Sept 1st so I am an

adult and I know the majority of cholesteatoma patients are children

so I shouldn't complain at all. I don't complain to family or

friends I keep a really good face on for them I just needed to vent

my frustration and wanted to share the TMJ information.

[Guest guest]

Feel free to vent all you want! That's what we're here for. We

understand exactly how you feel. My kids (13 and 17) acted like I

was just going in for a regular office visit when I was going in for

surgery. I was scared to death and afraid something would go wrong

and I would never see them again. The night before, I was a nervous

wreck and they were acting like normal teenagers and fighting. I

wanted to explain to them just how serious this surgery is. But I

knew that freaking them out would not help matters at all. It's nice

to have someplace to go where everyone understands!

I've never had TMJ, but after both of my surgeries I have had a

problem with my jaw and didn't understand why. Each time, there were

a couple of days where I couldn't close my teeth together. (does

that make any sense??) My front teeth would line up but my back

teeth wouldn't touch so I couldn't chew. It was a real pain - but it

went away. I can't imagine still having that problem since June!

On a brighter note, my reconstructive surgery was a success ... I can

hear! And some sounds that drove me crazy, aren't so irritating

anymore. But every once in awhile, it does feel like someone's

finger is sticking in my ear. Sounds weird, I know, but I actually

get the sensation that something is in my ear.

Ah, well, never a dull moment with this c-toma! Hope your TMJ gets

better soon. Keep in touch,

> I had my first surgery on June 5th lost 1st and 2nd hearing bone

but

> was able to save the 3rd most important bone. Complete

> Mastoidectomy. Surgery was 3 hours as well as recovery. My

biggest

> complaint after surgery was I was unable to talk due to jaw pain.

My

> Dr said this was normal. After weeks of not eating, awful

headaches

> and having to talk without moving my jaw I was treated for TMJ. I

> have had TMJ in the past but nothing like this. The surgery and

the

> ordeal itself is bad enought without another problem. Anyway I

guess

> the moral of this story is if you have had TMJ problems in the past

> and expect to have surgery make sure you make your Dr aware that

you

> have TMJ. When you are intubated they must open your mouth quickly

> and wide. My Dr also informed me that special precautions can be

> taken during my next surgery. I am still being treated for TMJ by

> the dentist. I am on soft diet and can't talk much. I'm sure my

> husband doesn't mind that.

>

> I am still coming to grips with the Cholesteatoma. I am very

> frustrated with the lack of hearing. Not just the lack of but

> sometimes sounds drive me crazy. Sounds like glass dishes. I find

> it very difficult in meetings because I don't always hear exactly

> what is being said. Eating in a resturant is awful. I always

> thought that if you had a problem hearing you just couldn't hear I

> never imagined that sound would be so internalized. I don't sing

in

> the car anymore....I am having the surgery next year to hopefully

> replace the missing bones if the cholesteatoma has returned my Dr

> will do a Radical Mastoidectomy. So I am not going to get to

excited

> about getting any hearing back I will just wait and see. I am sure

I

> sound like I am whinning and I guess I am but I truely feel very

luck

> it could always be worse. Also I turned 42 on Sept 1st so I am an

> adult and I know the majority of cholesteatoma patients are

children

> so I shouldn't complain at all. I don't complain to family or

> friends I keep a really good face on for them I just needed to vent

> my frustration and wanted to share the TMJ information.