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Author Topic: How many surgeries is the record here??  (Read 2938 times)
hannahanna
Newbie
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Posts: 1


« on: January 19, 2011, 01:26:41 PM »

Hey, my name is Hanna and I'm 15. I got diagnosed with cholesteatoma when I was 8, and I don't really remember it but it's been downhill since then. I've had 20 surgeries (all cholesteatoma related) in 7 years, all done at Children's Hospital of Philadelphia. Even my doctor, who had like bajillions of other patients, could remember details about my ears.
I have moderate hearing loss in both ears and have just got hearing aids (yesterday actually). I have some social problems but for the most part, it's not painful for me.
Anyways, I was wondering if anyone had had more? Or am I alone here?  Huh
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Teresa
Newbie
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Posts: 2


« Reply #1 on: February 09, 2011, 03:08:08 PM »

Hanna, your not alone. I have had so many surgeries I lost count.
I do have to tell you that you are a very lucky girl.
The advanced technology has made the surgeries, recovery and Dr. awareness much  better.  And the hearing aids are not a funny looking as they were in the 1950's
I have had Cholesteatoma in both ears since 1958, when I was born with scarlet fever and I was very sick. When I was 7 my Dr. had to remove my right eardrum. I am completely deaf in my right ear, a small portion of my left ear drum was saved so I can hear with the assistance of a hearing aid, that I received when I was 25 years old.  I visit my ENT every 60 days for surgical cleaning of each ear. 
I wish I would have had a hearing aid when I was a child. My family did not have the money and my mom did not want the other kids to make fun of me so I spent my childhood not really understanding why I was different, most of the time I thought I was just stupid, so I faked understanding.. Nobody told me I couldn't hear, I thought everyone heard the way I did..

A few tips: Keep cotton in your ear when your not wearing a hearing aid.
                Keep water out of your ears, have ear molds made by your audiologist for swimming & showering (water has bacteria in it)

Be proud of your hearing aid. others will only tease you if you let them think it's an issue.
You are a brave girl with courage.. wow you have had 20 surgeries! that makes you a warrior! 

I am happy to talk with you about your social problems or fears. I have had them all!
And I can share any tips or my stories with you. Just let your parents know we are communicating Smiley

Teresa
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AngieSA
Newbie
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Posts: 10


« Reply #2 on: February 11, 2011, 12:51:27 PM »

My son of 6 needs to go for re-look surgery within the next two weeks or so.  I just like to thank you for your post. It has given me hope for my sons future.  As a mother I never wanted my son to have problems with his hearing, but I guess these things just happen.  But reading your story Teresa has given me new hope.
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