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 ]

Matt Marsteller, 46, matthewm@andrew.cmu.edu

Howdy folks!I reckon my story is going to be a lot like yours - I've read them all - thank you for sharing! I can remember my first earache. It was 1968 - the day before my Dad's second marriage. I was absolutely miserable. The earache lasted for a week and it was positively maddening. At the wedding, all the old folks did all kinds of weird things to make me feel better - even blowing pipe smoke in my ear! Hey, it was the thought that counted I guess. About a week later I laid back in the bathtub ... and the earache disappeared. Go figure. Throughout my childhood my hearing was never great. At about 12 I had the totally ineffective tonsils & adenoids removal. I had ear infections on and off for years. When I was in the Navy, they tested my ears and misdiagnosed it as just glue ear. I plowed on through life going to college after my Navy days. By the time I was 30 I was working for a private company running a research library for the Department of Energy. I would go to the facility doctor for annual medical checkups - and of course for those ear infections I seemed to get every few months. Eventually I was lucky enough to get a job at Carnegie Mellon University in Pittsburgh. I'm still working as a librarian, so my hearing is pretty important - eventually students just learn to speak up. Just after starting at Carnegie Mellon, I noticed that everything I was eating tasted terrible ... with one blessed exception - Thai Curry Chicken! That I could taste! I ate it every day. I seemed to be having more and more trouble at the reference desk. One day one of my coworkers got a new computer and the IT guys asked me if I wanted her old computer speakers. I snapped them up in a heartbeat and scampered off to hook them up. Well, I plugged them in and tried them out. Just my luck ... I thought the speaker on the right was broken ... but as I bending down to jiggle the speaker wire I noticed that I COULD hear it with the left ear. Just a wee bit of panic set in. I went next door to our Computer Science Librarian and started the conversation with "______, please don't goof around ... this is serious." I asked her to start talking in a normal voice and then alternately plugged each ear. I couldn't hear a blessed thing out of the right ear. Well, I went to my primary care physician - and she gave me the stock exclamation of "my that's a badly infected ear" and wrote me yet another prescription for an antibiotic. I returned a couple of weeks later - still no hearing and it really didn't feel any better. At that point (she was a fairly new primary care physician for us - our prior doctor had moved away) she said that my problem was beyond her and that she wanted me to see a friend of hers at the Eye & Ear Institute of Pittsburgh. It took Dr. Jennifer Grandis about 5 minutes to diagnose cholesteatoma, but all she did was mutter a bit (which I couldn't hear of course) and left the room quickly. She came back with Dr. Barry Hirsch. He took one look and said "Yep!" Then they started to tell me what was wrong. I kind went numb all over and about all I took from that meeting was "cholesteatoma" and "we need to operate." "Usually benign" was slipped in there as well, but hearing about surgery kind of negated the good news of cholesteatoma being a benign cyst. I got home and told my wife and she just about had kittens. She scheduled a second meeting with Dr. Hirsch and he patiently explained the whole thing to her. On the way home she said - "Why does all the weird stuff always happend to you?" Needless to say neither of us had ever heard of cholesteatoma.Well, it's all a big blur, but I had my first surgery in ... I believe ... January of 2002. It started very early in the morning and my poor wife was waiting on me all day long. We were the first ones there and the last ones to leave. Like many of you, my cholesteatoma was much larger than they suspected. Luckily it tended to grow in all the right directions - even the taste nerves turned out okay once the pressure was off of them. They stuck in artificial hearing bones and things seem great for the right ear. I did have one recurrence and had to go back in for more surgery in summer of 2003. As I scooted on the operating table I told Dr. Hirsch in a deadpan manner that I was fairly sure that the cholesteatoma was close to my brain this time. He asked me why I said that and I said "Well ... because just last week I actually had thoughts of voting Republican." A chorus of groans were followed by the anaesthesia. :-)I made it through a couple more years of disease-free check-ups, but in 2005 cholesteatoma was detected in left ear. I went through that surgery, but this time the results were only to produce a disease-free ear. I don't have very good hearing on the left. I guess there's a bit too much nerve damage. I need to take my left hearing aid (I wear 'em in both ears now) in for a new door and to see if they can make it amplify a little more. I still have trouble in meetings and at the reference desk, but hey, I'm alive (and still usually voting Democrat). I'm just trying to live life large and make everyone's day a bit brighter. My last checkup went well and Dr. Hirsch had a new toy - a video camera - and I was able to watch his inspection of my left ear. There was a rather dreadful looking bright red swelling and he said he was going to cauterize it. All I could think was - "what the ____! Is he gonna stick a flame thrower down my ear canal?" But cauterizing can also be done with chemicals. He took what looked to be a dirty little brown q-tip and swabbed that infection area away - and I got to watch the whole procedure (and no, I did NOT faint)!In all seriousness, I think there is a dreadful education problem with general practitioners and apparently some ENT's that focus more on noses and throats than ears. If any of you are interested, I have a Group on Facebook that I call the "Intergalactic Group of Cholesteatoma Haters." Signing up for Facebook is free and frankly a lot of fun. Once a member, all you have to do is do a simple search for "cholesteatoma." The only hit is my Group page so far and yes, for the time being it is STILL only a group of one! Maybe some of you will join the group. We could start an awareness project or maybe give a Doctor an award for the best paper on cholesteatoma treatment/detection/etc. or whatever! Even if we just commiserate ... that's a start. Take care, stay disease-free and I hope you join the group!Sincerely,Matt MarstellerHead, Science LibrariesCarnegie Mellon Universitymatthewm@andrew.cmu.eduFounder and Guiding Star(hoping to be "Guiding Star Emeritus" soon - I always wanted that Emeritus title - one of you can be the Guiding Star)Intergalactic Group of Cholesteatoma Haters