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 ]
[ Story 41 - Kelsea F., 14 ]
[ Story 42 - Michele M, 62 ]
[ Story 43 - Cherie H, 30 ]
[ Story 44 - Cheryl York ]
[ Story 45 - Leslie B ]
[ Story 46 - Elisha D, 16 ]
[ Story 47 - Ashley M, 22 ]
[ Story 48 - Ryan L, 17 ]
[ Story 49 - Robert H, 50 ]
[ Story 50 - Jame M, 28 ]
[ Story 51 - Sally B ]
[ Story 52 - Mike Coleman, 18 ]
[ Story 53 - Luz R, 44 ]
[ Story 54 - Mela C, 46 ]
[ Story 55 - Tyler S, 19 ]
[ Story 56 - Matt Marsteller, 46 ]
[ Story 57 - Emma-Louise M, 13 ]
[ Story 58 - Steffanie E., 49 ]
[ Story 59 - Umi H, 20 ]
[ Story 60 - Pam M, 44 ]
[ Story 61 - Lorna P, 41 ]
[ Story 62 - Kerri M, 31 ]
[ Story 63 - Bev I, 35 ]
[ Story 64 - Angela H, 17 ]
[ Story 65 - Curtis H, 32 ]
[ Story 66 - Georiga K-H, 17 ]
[ Story 67 - Kara, 21 ]
[ Story 68 - Hanes B, 8 ]
[ Story 69 - Nikki C, 15 ]
[ Story 70 - Amanda O, 21 ]
[ Story 71 - Leah S, 23 ]
[ Story 72 - Carol F, 43 ]
[ Story 73 - Kira H, 16 ]
[ Story 74 - Deborah G, 54 ]
[ Story 75 - Ollie F, 54 ]
[ Story 76 - Erik N, 23 ]
[ Story 77 - Rus W, 43 ]
[ Story 78 - Arlene U, 30 ]
[ Story 79 - Michelle P ]
[ Story 80 - Judy K ]
[ Story 81 - Melaine B, 20 ]
[ Story 82 - Tim S, 26 ]
[ Story 83 - Steven M, 28 ]
[ Story 84 - Paul R, 24 ]
[ Story 85 - Jonathan V, 15 ]
[ Story 86 - Allison S, 21 ]
[ Story 87 - Mark S, 49 ]
[ Story 88 - Rita B, 59 ]
[ Story 89 - Chris K, 27 ]
[ Story 90 - Gary L, 58 ]
[ Story 91 - Brendon W, 15 ]
[ Story 92 - Rich J ]
[ Story 93 - Kalli B, 15 ]
[ Story 94 - Eliza B, 26 ]
[ Story 95 - J.C. Main, 23 ]
[ Story 96 - Kristine P ]
[ Story 97 - Catalin F, 30 ]
[ Story 98 - Nell Canton ]

Mela C, 46

I want to share my story with you as I am sure you will understand just how i feel. I had constant tonsilitis from the age of 3 and eventually I developed repeated ear infections. In those days the doctors refused point blank to remove ones tonsils. When I was 9 I had my 1st ear op due to acute mastoiditis and cholestiatoma.. This was the beginning of years of repeated surgery in both ears. They removed my tonsils when I was 10 but by then the damage to my ears was already done. I received my first pair of hearing aids (ones with ear moulds and fitted behind my ears) when I was 13 and it was an amazing experience. Due to having so many operations sometimes 3 a year (the cholestiatoma and mastoiditis kept coming back)I would miss alot of school not to mention not being able to hear made school hell. Even though the teachers knew I couldnt hear so well they still walked up and down the aisles reading notes which we had to write down needless to say I had more blank spaces than words. I failed 3 times because of being in hospital so many times and missed so much work. My father kept telling me I was stupid which was very cruel . I eventually was in the same grade as my younger sister which was very embaressing but also helped as I would get my notes from her.My mother tried to get me into the deaf school but the nuns at the school turned me down as they said I was not deaf enough and my speach was perfect and if I was to mix with kids who had speech defects from being deaf it would have a negative effect on me. I went to art school in grade 10 but battled and dropped out at the end of that year. I did not have the techniques which were taught in grade 8. By the time I was 14 I was totally deaf in my right ear and from all the surgeries I had no nerve hearing left and my canal collapsed. I developed an allergy to the plastic tubing that fitted into the ear mould and the top of my ear was constantly raw, I would ease my aid on in the morning and remove it when I went to sleep. The pain was awful sometimes I would wrap a piece of cottonwool around the tubing to give my ear some protection. I remember having one of my ops and because they removed so much bone they were worried my ear canal would collapse so they made me a hard mould and every day twice a day I would have to take it out clean my ear and the mould and put cream on the mould and reinsert it. I had to keep it in 24/7. Every week for 6 weeks i would go back to the audiologist who would make a bigger one. Those days were absolute hell. Oneday when I was having a check up the professer told my mom he was sure my hearing was worse than we thought and that i was actually lip reading. He said "hello" but with no vocals and asked me how I was and I answered him. I have been lip reading ever since. When I was 18 the cholestiatoma had grown back and the mastoiditis was very severe. I had a major op on my left ear and the professor told me it was a miracle I should have been dead as the damage and infection had been so bad. I guess its a case of only the good die young.After this op I suffered from severe blackout and it was both scary and dangerous as I had a number of blackouts in the street some with bad injuries, I no longer went out on my own.This lasted 2 years, no one could tell me why I was having them. I have always had episodes of tinnitus and vertigo and my sense of balance is terrible I always look like I have been at the bottle. I had new hearing aids every 2 years. I must add that with each op my hearing got worse and worse. Communication became harder and harder I became very introvert. When I left school and tried to get a job it was a major battle as my hearing was always made to be a huge problem. When I did get work I had to work 100 times harder to prove that my hearing was not the issue but ignorance most certainly was. Unfortunately here in South Africa handicapped people have a very hard time getting jobs. It is only in the last few years that the law states that if we have the qualifications we are entitled to get the job. I remember one interview where the manager told me all about the job and said i was perfect for it BUT my hearing was an issue as he didnt know if his staff would cope with it. I asked him if he had had any problems communicating with me and he said "no" but still felt it would be a problem. I told him I was very sorry for him as he had a bigger problem than I did and left. Having my father constantly telling me I was stupid I began to believe I was and by the time I started working I had no self esteem and my self confidence was non existent. My ears settled down for 12 years. In 1984 I developed a very serious ear infection in my left ear, I always had a problem with infections from the moulds they used for the aids, I dont know how many different types they tried but to no avail. Anyway for 18 months I went from ENT to ENT none of whom were prepared to operate as there was a 50% chance I would not make it out alive. Eventually I saw an old professor who had a few patients who he saw at home. He took one look at me and booked me in for surgery the next morning. It took 8 hours to clean up all the infected tissue. I had 4 surgeries to rebuild my inner ear. He made me a new eardrum but no hearing bones. At first he kept the canal from healing too quickly by removing the scabs and only once the chances of my canal shrinking was over did he graft skin from my thighs to cover it. I underwent 4 surgeries in 3 months and a total of 20 hours to clean and rebuild my ear.If I develop hairy ears I will know why . It was only after this op that I found out the blackouts had been caused by damage to my vestibular. Needless to say that was the end of my nerve hearing. I was fitted with my first bone conducter aid (works with a band and body aid) and it was great that I could hear but I got headaches from the band. Last year that aid was no longer strong enough and I was fitted with a BAHA. I have the Cordelle 2 it has the box aid and cord and the bone conductor that fits in the rod. It is the best thing that happened to me. Having the rod inserted was extremely painful but oh so worth it. The sound is so much better, for the first time in my life I can hear people talking in another room, and just generally hear when I am spoken to. Its such a wonderful feeling. Besides it being physically painful it was also emotionally painful. I am 46 now and my ears have been clear for 12 years I go for annual checkups and have my ear cleaned out. I have never been allowed to get my ears wet .I have only been on a short flight on a plane and been fine with that.There are so many things I have never been allowed to do like swim or ride a bike or run around as kids love to do. I was never allowed to do gymnastics or play sports. I cant drive. So very many things Technology being so improved hopefully the chances of cholestiatoma getting so out of control is no longer a worry. I have had a total of 32 operations and have been told I will need further surgeries in years to come when the grafts have worn away and to rebuild my eardrum although my canal has closed up alot so only time will tell. To all of you out there who have Cholestiatoma or have had it be strong. Mela Its been rough but I am alive to tell my tale and that is really something.