Stories From People Who've Had an Experience With a Cholesteatoma   
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Stories

[ Story 1 - Jeff Pittman, 18 ]
[ Story 2 - Ronald ]
[ Story 3 - Lisa G. ]
[ Story 4 - Kathy M. ]
[ Story 5 - Jacob, 7 ]
[ Story 6 - Miranda ]
[ Story 7 - Mason ]
[ Story 8 - Kim D. ]
[ Story 9 - Tiffany ]
[ Story 10 - Samantha B. ]
[ Story 11 - Elizabeth ]
[ Story 12 - Erin H. ]
[ Story 13 - Sandy J. ]
[ Story 14 - Danielle ]
[ Story 15 - Micheal ]
[ Story 16 - Janice ]
[ Story 17 - Kari ]
[ Story 18 - Audrey ]
[ Story 19 - Vinny ]
[ Story 20 - Angie & Cody ]
[ Story 21 - Dave, 39 ]
[ Story 22 - David, 53 ]
[ Story 23 - Jason W, 18 ]
[ Story 24 - Kayla S, 23 ]
[ Story 25 - Melissa C., 35 ]
[ Story 26 - Matt K, 21 ]
[ Story 27 - Patricia N ]
[ Story 28 - Alan B, 19 ]
[ Story 29 - Jonathan, 20 ]
[ Story 30 - Joel M, 38 ]
[ Story 31 - Jacki C, 21 ]
[ Story 32 - Elizabeth Oliver, 61 ]
[ Story 33 - Ryan T, 24 ]
[ Story 34 - Carolyn S, 55 ]
[ Story 35 - Lisa A, 26 ]
[ Story 36 - Steve M, 33 ]
[ Story 37 - Melissa M, 40 ]
[ Story 38 - Adam V, 20 ]
[ Story 39 - Michele C, 28 ]
[ Story 40 - Kevin Davidson, 55 ]

Umi H, 20, umigotmail@gmail.com
I think my storyll be slightly longer and different than others. I think, so far Ive seen most people (well, Ive just read a few :)) are going to succeed battling with this cholesteatoma. For those who dont, were in the same shoe. Sorry for my lousy English, it's not my first language. I dont know anything about cholesteatoma until now, when I decided to search about it in the internet, and I found this site. I only listened to what the doctor says when I was little as I dont even bother about my desease was. Well, I do know a bit based on what the doctor says but I did not make any further research about it.I was diagnosed with perforated eardrum when I was 7. But then the doctor decided not to do any operation because he thought that it might cure as I grow up. I was born with cleft-palate and undergone an operation when I was 6 months old. The doctor said that the cause of my perforated eardrum might be due to my cleft-palate (I read an article about cholesteatoma that it might be caused of bad eustachian tube). I lost 60% of my hearing at that moment of time.Later, when I was 13, the doctor whod been treating me since I was 7 retired (I went to a university hospital in my country), and I was introduced to another doctor. He then decided to do an operation since my eardrum has not showed any progress that its cured. I remembered before the operation, everyone (other ENT docs) seems interested to have a look at my ear, even the medical students (since its a university hospital) were mesmerized with what they saw. They said that there were pocket-like thing on my eardrum. Later after the operation, the doctor found out that I had cholesteatoma. One of my ossicles gone (the one near to the eardrum, Malleus), probably has been eaten up by the cholesteatoma. He clean up everything, and decided for an operation to reconstruct later.I had undergone 4 operations since then, and in the end, I lost my hearing in early 2006. The doctors seem like giving up hopes for me now. During my 2nd operation done 12 months after the first, the doctor decided to reconstruct my ear and to their surprise, the third bone (Stapes) left with only its base. I dont quite remember what happen to the second bone, either it is found disappeared during the first operation or later but the doctor prepared 2 plastic bones for reconstruction. He told me that he tried to hook the second bone with the third only to its base. To my surprise and the doctor as well, a few months later, the bones have no longer be in their designated place and it came out of my eardrum. The doctor then decided to make another operation.For the 3rd and 4th operation, I was not that clear of whats going on but all that I know, during the third operation when I was 15, he put on some gel inside and decided to make another operation 4 months later. All that I know he made some drainage (just like what I read about other people) and later I need to do check up every 3 months to clean up the wax.I started to lose my hearing after 4 years since the last operation. I woke up that morning finding out that my right ear feels numb. I thought that was normal and I would get my hearing back after I move around or tapping my ear. To my surprise nothing happen and I decided to call my parents. I had an exam that day and it turned out to be not that good and after the exam I went to see the doctor. The doctor gave impression that its not a bad news or what and I cant really remember what he actually meant. Only later after few appointments I found out that this hearing loss is expected and the doctor has not been deciding to make any operations then and every time I met him, he just told me to meet him in 3 months. Due to his workload, he introduced me to his friend, one of the team members in the operation who knows a lot about me. Im so much disappointed now as I found out he didnt give me any hope of recovering. Just as the previous doctor, he told me to visit him every 3 months to clean up the wax. Now, I have to accept that I can no longer hear at my right. As a student, I sometimes find its hard for me as my friends sees me normal. I act normally and I did sometimes hear what they say(that'll only applies when they talk at a normal voice. There are times during class they'd call me in their soft voices that I couldnt hear them and they then thought Im arrogant or perhaps 'deaf'. I had an experience where my classmates called my names so many times to pass out the attendance sheet but I hardly hear their voice because it was so soft and we were having lecture. They laughed at my back saying that I did not clean up my ears. Later my friend took the sheet and she told me the story after the class as she heard everything. I was so disturbed with that. To date, I think I did not lose all of the hearing but I think that it would be only 1%(that's my own stats). I could hear something but not the speech. The sound I could hear was only 1%. I cant remember the result of my hearing test but I remembered the audiologist told me that I have bad hearing loss. I am so sad now. But I thanked the doctors for trying.Umi-Malaysia