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 ]

J.C. Main, 23, cmain@email.unc.edu

At one point I actually gave my cholesteatoma a nickname, since for so many years it has been living in my left ear like its some posh, excellent apartment, but I have since forgotten the name! Where do I even begin!? Like many people with cholesteatomas, the story does not seem to end. Mine (story) has been growing for 7 years now. And in three months, when I return to the US after studying abroad, my ear doc has insisted on yet another surgery... and this will be the fourth.Maybe I had lots of ear infections growing up, I am not too certain, because every year I would get strep throat. Perhaps ear infections were "attachments" to my strep... Anyway, when I was 13, 14, or 15 (I need my medical files to remember), I had the flu really bad and a subsequent ear infection that resulted in an ear ache for a month. I went to my "family doc," who diagnosed my ear as having an inner ear infection plus liquid. He put me on antibiotics; "Come back in one month for a check-up." So I did. And again, same thing. Another antibiotic. Then another! AND one more! The idiot put me on FOUR antibiotics before his overpaid self realized, "Hey, maybe this kid should see an ear doctor!"So I did. Smart move. Of course after 4 antibiotics the infection was gone, but the liquid remaind. My new ear doctor (Dr. John Byers from Greensboro, NC) then inserted an ear tude to drain the liquid... "No problem, we all thought."Of course, next, being in the wonderfully horrific healthcare system of the US, my parents got behind on their payments to my ear doctor and I did not make my return visits when I should have.A year and a half after the ear tube, I went for a checkup... and GUESS WHAT? Doc did a CAT scan because he saw something bizarre behind my ear drum (but of course my ear drum was blocking his view) and found my dear old friend the CHOLESTEATOMA! This was in May of 1998. Doc said I was able to wait, and thus be safe, to have the operation until December. Upon opening and revealing my inner ear in surgery, he would then know the extent of the "tumor."November 17: The day of surgery (imagine) I awoke with a wet, packed feeling in my bad ear, and upon touching my ear immediately after waking, it was full of blood! This had never happened in my ear. My parents and I flipped, called the doc, and he said, "no worries." Anyway, the 2-3 hour scheduled surgery lasted 4-5 hours, because the tumor had done much more damage than anticipated. It destroyed all three ear bones, had encased my facial nerve, and had eaten away my brain casing, but luckily had not entered my brain (or so they say- I attribute dumb moments to this possibility!). So, my doctor removed as much of the tumor as possible, and removed 4 cubic centimeters of my ear canal also. The cholesteatoma remained!November 1, 1999- Second surgery. Only a year's difference. This time, doc only made an incision through my ear canal (not having to cut down the back of my ear and flip it over again), cut out my ear drum, and "opened" my ear canal in order to "see" and manage my inner ear without surgery. Again, he removed as much of the cholesteatoma as possible.2000-2003- A period of more than three years of visiting my ear doctor at least every three months to allow him to literally suck out the cholesteatoma while I sit as still as possible, awake, in a regular doctor's room. Imagine, Doc tilts your head, tells you not to move, turns on a machine that sounds like an air pump, and inserts a skinny, aluminum tube into your ear to suck out debris, cholesteatoma, and whatever else gets in the way! It is painful, loud, uncomfortable, and scary! In the same peroid, though, I did get a behind the ear hearing aid that I adore. I love turning it on and off. It is like a toy. And I do not have to explain to people my hearing problems- they can see! Towards the end of this period, my Doc told me to find a new, better ear doctor who was comfortable with completely removing the cholesteatoma. He honestly was not sure where to go from there. I went to three specialists, or potentials. The first two gave me SUCH different advice. In fact, the horrible one kept knocking on wood and smiling when saying the potential surgery would work! How awful!September 9, 2003- And onto the third surgery. Unfortunately, the new (and still current) doctor, Dr. John McElveen, has no personality or warmth whatsoever, like my other Doc did. Fortunately, though, new Doc is excellent with cholesteatomas, or so I have been lead to believe. ;) New Doc cut down the back of my ear again, completely removed the tumor (very carefully!), and grafted a new ear drum created from skin cut from my scalp. What he did was create a closed, stable inner ear environment again.2004-2006- Visits with the New Doc every 3-6 months, in which he sprays and coats my ear canal and ear drum with steroid, antibiotics, and a nickel-containing liquid that calms my ear canal tissue that is always discharging and inflamed. 2007- Onto the fourth (insert explicative) surgery in August! Apparently my cholesteatoma is back, only this time it is outside my ear drum. Only my ear drum is being pulled and stretched (and will eventually puncture soon) inward towards my inner ear due to badly functioning inner ear pressure and eustachian tube problems.There are two kinds of advice of much importance I want to stress from my experience.First, be careful with health insurance. We know that healthcare in the US can be shabby when it comes to cost and insurance. Currently, with my preexisting, my health insurance costs $800 per month. Unbelieveable! I cannot afford this, and my job does not come with benefits. So, I have to somehow come up with more than $7000 for this 4th surgery. Second, and I am not joking, enjoy your health problems and surgeries. Laugh about your cholesteatoma and lack of hearing. Make fun of yourself. Tell people about it. And always remember, surgery is wonderful because: 1) You have the best excuse to miss work and school for at least one week; 2) Everybody in your life worries about you and wants to help and take care of you; 3) You have so much free time; 4) And you legally get to take some of the best painkiller ever! Enjoy!