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 1 
 on: May 14, 2017, 10:31:07 PM 
Started by J - Last post by Rothcombs
Is your life now normal?

 2 
 on: May 12, 2017, 02:55:04 AM 
Started by LalaD - Last post by Rothcombs
How is your treatment? Are you ok.

 3 
 on: April 05, 2017, 10:22:03 PM 
Started by jowen - Last post by KenryLee
I want to explain more than this a bit offline.

 4 
 on: April 05, 2017, 10:14:25 PM 
Started by BaKa1020 - Last post by KenryLee
Want to learn more deeply how to do?

 5 
 on: March 06, 2017, 04:15:19 AM 
Started by Tim Pierzita - Last post by Ryanscott
Please recommend such matters to me more. And I like to listen to the story. Since it is something wonderful

 6 
 on: January 26, 2017, 03:47:15 AM 
Started by crust - Last post by Captainwin

What is it to read the information into knowledge so too. I like it a lot because I'm not that good.

 7 
 on: August 24, 2016, 06:10:22 PM 
Started by LalaD - Last post by LalaD
I have had pulsative tinnitus and major hearing loss for 1.5 years now. I was told it was allergies until a new doctor decided to look in to it further.
I started having pain & was told it was an ear infection about a month ago. 2 rounds of antibiotics & pretnasone with no improvement, Hearing test, MRI, & many doctor visits later, I finally saw an ENT yesterday. He cut a hole and drained a small amount of fluid, but not much. Then he saw what he is sure to be c-toma.
I have CT scan scheduled for Saturday & an appointment with a surgeon next month.
I have been in pain for a month now and it seems to be getting worse daily. I am taking advil 24/7 to keep it manageable.
The ENT said my ear was not sucked in and there is no hole or discharge, so it was hard to diagnose.

I haven't seen much about pain being a symptom. Has anyone else out there had severe pain? It is so frustrating and having two small kids, my patience is already running low. It is a daily struggle. I am happy to finally start getting answers, but frustrating and scary to think it is something that will take some time and possibly many surgeries to maybe fix the problem.

 8 
 on: June 24, 2016, 07:45:57 AM 
Started by BaKa1020 - Last post by BaKa1020
HELLO,

I am an adult having had her first mastoidectomy and wall down procedure at 4. I have had life long care and complete hearing loss in my left ear. My father had the same exact surgery and issue (just much older). As you can guess we both of congenital cholesteatomas. I now have 2 daughters, and brought up my concerns to their ENT, they seemed to have dismiss this as pretty rare.

Are there any other people out there that have congenital cholesteatomas that they passed onto their children?

Thank you!

 9 
 on: February 19, 2016, 03:27:04 PM 
Started by jowen - Last post by lisa
Hi
Did your daughter have the CWD surgery?  Is she limited on activities like swimming?  My 13 year old has had 3 surgeries and it keeps coming back - she has infection that they can't clear up with antibiotics so going to infectious disease center at University of MN next month.  I am a nervous mom and this has been going on for almost 4 years now....  Also taking her to Iowa to see Dr. Gantz for second opinion and to see about his surgery which sounds like what your daughter had done. Any information about your story helpful... My daughter has 2 hearing bones gone and retracted eardrum - her eustachian tubes just suck it all back in....Her c-toma was large when discovered as well - It did not affect facial nerves, but worried it is growing more now that she has this infection in her ear....she is not in any pain and seems normal!  Thanks

 10 
 on: December 26, 2015, 05:50:06 PM 
Started by jowen - Last post by jowen
My 17 year old daughter had her cholesteatoma surgery 1 1/2 weeks ago at Vanderbilt Children's Hospital. After much reading and searching, we choose Dr. David Haynes, the head of ENT at Vanderbilt. He solely focuses on ears, especially cholesteatoma and cochlear implants. He has been doing research and surgery on these conditions for many years. Dr. Haynes visited with me via telephone during the decision making process and was extremely patient and kind in answering my questions. My experience was the same with him during our office visit and after her surgery. He takes all the time you need and tries to help you understand all that is involved. My daughter's cholesteatoma was much larger and more invasive than he expected. He replaced all 3 ossicles; and grafted a new eardrum, and canal around the eardrum. The cholesteatoma was wrapped around her facial nerve and he was able to get it off with no damage. She is just now more like herself and having less pain. We return to the Dr. next Monday and will begin to know her medical progress and at some point, how her hearing is. So far in this process, I highly recommend Dr. Haynes!

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