Re: Worried About Cholesteatoma Surgery

April 8, 2011

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.

>

April 8, 2011

Hi,My name is Kathy and I'm 55. I was just diagnosed with a cholesteatoma a couple of weeks ago, met my Dr. at the House Ear Clinic in LA just a few days ago. I was pretty freaked out when I first started reading up on this condition, but finally, having met my Dr., really asking questions and (very important) taking my husband along to be a advocate for me and ask even more questions, I feel pretty good about the upcoming surgery. It is not without risks, but the risks are, I think, less a problem than the growth. I've been wearing hearing aids for the last 10 years and do worry about my hearing but putting into perspective what the alternative could be was helpful. I think this type of surgery has come a long way and there is

less risk loosing one's hearing than there use to be.So.... long winded story just to say, meet your Dr., ask lots of questions and look at the big picture! And, I'll remind my husband to tell me the same thing when I have moments of doubt and concern.... )Wishing you the best of luck!!From: lkevelyn45 <laurakate.evelyn@...>cholesteatoma Sent: Fri, April 8, 2011 12:05:41 PMSubject:

Worried About Cholesteatoma Surgery

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.

April 18, 2011

First of all it is totally normal to have concerns regarding this surgery and

disease. I am also a worrier. This will be my 4th surgery (2 days away) and I am

worried. But I am worried that the disease will grow back not that anything bad

will happen. Last year the disease destroyed the 3 bones in my ear so my hearing

in that ear was pretty much gone anyway. Like I told my surgeon I would rather

be deaf in that ear than have the ctoma constantly coming back. They can always

do a reconstruction later depending on the damage and improve your hearing

hopefully. Just try (trust me I know how hard this is) to think good things

about the surgery. How much better you will feel afterward, not so much at risk,

that you might gain some hearing and so on. I have to do the positive self-talk

just so I can walk into the hospital. This is a very scary thing to deal with.

There is a lot of follow-up care involved for many. I have been through this

surgery and after the surgery I always feel kinda embarrassed because I get

myself so worked up and then realize it was really nothing. But I don't come to

that realization until after the surgery. Like now I am 2 days before having

surgery again and my anxiety is high. I am on anxiety meds to help me. They have

some groups on Facebook and I have met some awesome people who I talk to

regularly and are friends via Facebook. We support eachother and talk and help

get eachother through the rough times. Just keep posting and asking questions

because there are tons of people out here going through the same thing and

feeling the same way. Trust me you are not alone. When is your surgery?