Saturday, August 2, 2008

July 29th...Cholesteatoma Day

Before the surgical procedure. Of course I forgot the camera so I couldn't take a picture of her as she was being wheeled into the operating room. I did plan on bringing the camera but there was no one else in the prep room with a camera so I didn't feel so silly forgetting. I guess it's not something you would usually document photographically.

This was a little bit after we got home from the hospital.

Passed out on the bed...poor Grace.

This was Grace last night. She looks pretty glamorous with her ear cup on don't you think??? The procedure lasted about four and half hours. A fairly long surgery. The cholesteatoma was much larger than the surgeon expected and he had to drill out a lot of her skull bone and of course the little hearing bones were completely eroded so they were out too. He had to pack a bunch of gel/foam type stuff inside where the bone used to be. It will slowly dissolve as her bone grows back. Grace has been a real hero. Very little complaining and very little use of the pain killers that were prescribed for her. She's actually feeling fairly good considering how extensive the surgery was. No hearing in the right ear at this point but hopefully she will get some of her hearing back. Another surgery in 4 to 6 months to make sure there is no more infected cholesteatoma. At that time the surgeon will place some prosthetic hearing bones in her ear. She might need a hearing aid but he said she should have fairly normal hearing at some future point. You go Grace...

45 comments:

Rebecca said...

Hello MamaLouise,
My name is Rebecca, I am sitting with my mother who saw your blog and told me about it. It made us feel better to read about Grace's Cholestetoma surgery. We hope she is still doing good. I am facing the same surgery. I have a Cholestetoma in my right ear too. I was just told on 11/13/08 and I am waiting for a surgery date. I have had three failed Tympanoplasty/Mastiodectomy surgies to repair my perforated eardrums. I am nervous about this surgery and it made me feel better to see Grace with her ear cup and to read about her. I don't know anyone else who has been through what I'm facing. I have a moderate loss of hearing and hope that I will also someday get my ears totally fixed!
Sincerely,
Rebecca Kessel
Please email me,if you can HereandNow91@juno.com

Anonymous said...

THANKS ALOT FOR DOCUMENTING THIS! It really helps to see that someone else has had this done and is doing well. My surgery is in 2 weeks and im soooo scared ive never had a broken bone or anything let alone a surgery so im really worried. Its werid that hers and the lady that commented both have it in their right ear because i too have mine in my right ear. I was told mine was congenital and i have a 45 decibal hearing loss and ive been getting vertigo spells so even though i dont want to go through a surgery i dont have a choice. The doctor said he will have to replace the eroded bones in my ear so hopefully i dont have to go through a second surgery and he just finishes everything in this one.
Thanks for the post it was nice to read about someone who is in my position.
Rachel

Anonymous said...

So glad I came across this. My 9 year old son has a possible cholesteatoma in his left ear and I've been trying to find information on the internet. It's scarey reading about it all-I'm nervous, but hope for the best.

Thanks

Dan said...

I've had this surgery 1 week ago, and I'm feeling quite good. The cholesteatoma wasn't really that big but the surgeon had to remove 2 of my ossicles in my right ear. I don't know yet how bad my hearing will be, but looks like it's not possible to rebuild the ossicles.

It's indeed scary to read about cholesteatomas, but oh well, it's not as bad as it sounds. I feel almost no pain and my ear only bleed during the following 3-4 days after the surgery.

Good luck to you all that are facing the same problem.

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Anonymous said...

Hello there.....,

I'm scheduled to have my cholesteatoma surgery my right ear on 21st of April this year. Right now...I'm feeling tense, nervous about the whole. Any advice or comforting words you can offer me that will make me less nervous. Grace is an inspiration & I hope my surgery outcome will come out the same as hers without pain or complaints.

-ELIZABETH
Pleasant Hill, CA

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I realize that the post about the cholesteatoma surgery was a couple of years ago. My son will have his 7th surgery for either cholesteatoma removal or tympanoplasty repair. I was wondering if Grace continues to have recurrences? My son is 7 years old. This is really wearing on us, we feel like there is no end in sight!! Please email me if possible. Thank you. And thank you for sharing Grace's story.

Angie said...

I forgot to leave my email address!! AngieMoulton76@gmail.com

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