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News: Please message me (username: admin) if you see spam type posts.  I will go ahead and delete them.  Thank you for your help, and stay strong.  -  Jeff /Cholesteatoma - Cholesteatoma.net Home Page
 
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 1 
 on: May 30, 2017, 11:31:45 PM 
Started by linda_lewis65 - Last post by linda_lewis65
Hi there,
I have been experiencing severe pain in my left ear for the past few days. Also, I find difficulty in hearing.
I have consulted the GP in my locality and he said there is a cyst growing in my left ear. I was shocked, but he said there is nothing to worry as it is a noncancerous skin growth in the middle ear. He advised consulting an audiologist from a hearing clinic in Toronto to remove the cyst asap.
He said if the cyst grows very large, it can destroy the surrounding bones and damage the eardrum resulting in a permanent hearing loss. I told him that I'm experiencing a slight difficulty in hearing. He said that it is because of the growing cyst which can increase pressure in the ear and can lead to hearing loss. Has anyone here with cholesteatoma suffer from permanent hearing loss?   

 2 
 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.

 3 
 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!

 4 
 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

 5 
 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!

 6 
 on: August 21, 2015, 10:41:49 PM 
Started by ammon44 - Last post by tabtait
hi just wondering how the hearing test came up as my son might be having a prosthesis put in to restore his hearing

 7 
 on: August 21, 2015, 10:36:31 PM 
Started by tabtait - Last post by tabtait
Hi my sons ENT at our last visit spoke to my 13 year old son about getting a total ossicular reconstruction done.  He said it could possibly dramatically improve his hearing.  Just wondering if anyone else has had this done and how did it go?

 8 
 on: July 03, 2015, 11:05:15 PM 
Started by jowen - Last post by jowen
After years and years of ear trouble, my 17 yr old daughter has been diagnosed with cholesteatoma. Her ENT in Jackson, TN, Dr. Karl Studtmann says she needs surgery and has referred us to Vanderbilt Children's per our request. We have seen our ENT there once, Dr. Edward Penn. He is very kind but extremely young and I am nervous about how much experience he has had with this surgery. Does anyone have specific recommendations for ENTs with cholesteatoma experience, especially at Le Bonheur in Memphis or Vanderbilt? Thanks for your help.

 9 
 on: June 22, 2015, 05:19:27 PM 
Started by Tim Pierzita - Last post by Tim Pierzita
Hello, at the age of two I drowned and was very quickly revived. I was told that your ears go first then the lungs, what ever that means? Well I developed an pneumonia and apparently my left ear developed an inner ear infection that went unchecked for years. Only after concerns from my teacher and bad grades were hearing test performed. I was deaf in my left ear. Thanks, now I get too sit in front of the class, so I could hear better. Around 1969 at the age of eight I had my first surgery to replace or repair the ossicles and to perform tympanoplasty. The 1st surgery was performed in Oakland Ca. by a Dr. Mrs. Cox or similar name I cant remember. Then a later operation to reconstruct the retracted ear drum and to rebuild up a bridge or back wall. Well this left me with 2 problems, still no stereo, and then at the age of twenty-three that I have a hole in my head that needs to be seen by a professional every 6 months. I have had the same ear Doctor for 31 years now. I don't always keep it dry and have battled many infections since. Sometimes I would go years without having the squamous debris and recurrent cholesteatoma removed.

While undergoing a recent annual DOT physical to determine my fitness to drive a commercial vehicle and to keep up with the new laws, I was ordered to have sleep depravity test performed because I am overweight. Only after an over night stay at a sleep study lab have I have been diagnosed with a sleep disorder. This is where it gets critical. In order to keep my $62,000 a year job, I now have to be fitted with, and use a CPAP Continuous Positive Airway Pressure machine with a monitoring chip. So far not a problem. While attending a class to be fitted for a CPAP machine I was surprised to see the small room packed with people. While trying the machine, I asked the instructor if it was normal for my (good) ear to pop like driving at high elevations. He said, "shhh!" Then I felt like air was coming out of my bad ear, and felt like air was rushing through my head. Again I asked him if this was normal, he said save your questions for the end of class, so I began asking those around me if they too had felt the pressure in their head. I was alone.

I brought the machine home and found out It was impossible for me to use. I described the pain as having a pencil wedged between my ears, with the sharp end pushing outward against my bad ear and the eraser part pushing against my good ear. I called Kaiser and explained the pain I was experiencing and they told me to stop using it. Then my own ear doctor said my ear drum is intact and basically keep using it, get used to it. The results from using that machine for me, were negative. I developed an ear ache in my bad ear that drained heavily for over 2 months. The pressure to my good ear lasted as long. and 9 months later I still have recurring sharp pointy pains that sometimes take me to my knees. More recent I have developed slight drainage, that requires another visit to my doctor. Unable to meet the DOT physical requirements my 40 years as a professional truck driver are washed up. I wonder if anyone else out there has had this problem using the CPAP? Thanks, Tim 

 10 
 on: April 25, 2015, 11:20:25 PM 
Started by invisibleink - Last post by SEichner
Hi.  I was wondering how you are feeling now that it is another month since you posted.  I just found out that I have a c-toma also and will be going to the House Ear Clinic in Los Angeles, to find out what my surgical options are.  I've only heard about a canal up or a canal down surgery, not an endoscopic surgery.  What is that, so I can ask about it when I go the clinic?  Is your hearing any better yet?  Was the surgery very painful?


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