Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Hi E, I hope you did indeed catch this early - the less damage the better. Many of us go for many years with slowly building symptoms until we get sent to the right ENT. I went through about 14 years of general practitioners saying " Gosh ... that's a nasty infection! Take this antibiotic and you'll feel better. " I'd usually feel better for a couple weeks and the it would slowly get worse again. Then, thankfully actually, I did notice that I couldn't hear out of my right ear at all. That time the antibiotics didn't work at all. So the GP sent me to a friend of theirs at the Eye & Ear Institute of Pittsburgh. This ENT's specialty was actually in rhinology, but she had a good eye. After just 5 minutes of looking at my ear, she tells me she thinks she knows what the problem is. She wanted a colleague to take a look as a second opinion. She comes back in a few minutes with her colleague in tow. He was the institute specialist in neurotology. After 14 years of " Gosh, " this guy takes about 3 seconds to look at my ear and say " Yup! " That was the beginning of me finally getting better. I was kind of numbed by the news, so I heard what I could and went home to tell my wife that I had a non-cancerous growth that the doctor said had to be surgically removed - end of discussion! She absolutely freaked and was on the phone in the course of two minutes waiting to talk to the neurotologist. We scheduled a second appointment with her present and he patiently went through the entire thing all over again. She peppered him with every imaginable question and the two of them came out of the meeting with a healthy respect for one another. We had never heard of this stuff! Many of us have the experience of our initial surgery taking much longer than anticipated, so tell your loved ones to expect that. It's no big deal ... they'll just take their time and try to give you a clean, dry ear. That's goal one. If they can do it, goal two is to restore your hearing. They may do this in the same surgery (like my case) or they'll schedule a second surgery. I was blown away by how much they can do to restore hearing. It's kind of cool that I consider myself bionic - if you look hard enough there is always a positive, eh? You'll probably run into discussions about recurrence (the lousy thing can grow back). Unfortunately this does happen to a lot of us. I've had two surgeries on the right and one on the left (they start checking both ears at that point on a regular basis). Right now I go back to the doctor for a checkup every 9 months and he fusses over how things look and shares his thoughts with his residents (it's a teaching hospital). I always let the younger doctors take a look - we gotta help the next wave get ready. These follow-up examinations are very important and I guess they're for the long haul (pretty much the rest of our lives). Some folks have to go back more frequently depending on their circumstances - it's case by case. I'll tell you not to get too worked up over the surgery, but it's human nature to do so. In my opinion as a patient, it's an annoying surgery, but not too bad. I've had worse. Honestly, I've found my own anxiety to be the worst thing. If you're a bit panicky on the day of surgery (I was for surgery number 2 for some reason), they can give something to calm you down. The second worst thing is how full my bladder was after the surgery - I guess I get a little cranky about that. The third worst thing for me was the minor nausea immediately after surgery (from the anesthesia - but after an episode or two that passes). The fourth worst thing for me was the pressure bandage that always manages to pinch some part of my ear. Tylenol would get me past that although on my third operation I did take one dose of the prescribed medicine. One very good thing to avoid is getting dehydrated in the days following surgery - please don't make that mistake. I did and I'll forever feel like a dope because of it. They told me to drink 'plenty of fluids,' but for me (at the time) that was a glass of something to drink once in a while (like once a day). Whoa Nellie did I get dehydrated and feeling awful. Ask the doc to specify the fluid intake. My GP told me (after 3 days of nausea) to drink 8 ounces of water for every hour that I was awake and that would have me feeling well in just a couple of hours. He was so right! It was like night and day. Let me pass along a link that I trust to give you some good information. I'm a science librarian, so I do my level-best to pass along only the good stuff. My favorite place for medical information for myself and my family is Medline Plus. It's done by the National Library of Medicine and the National Institutes for Health. See the entry for cholesteatoma at: http://www.nlm.nih.gov/medlineplus/ency/article/001050.htm Note that you can use the search box in the upper right of the screen and retrieve even more results. Just search for the crummy 'c-word.' The bottom line is that the surgery for me was far more easy on me than I would have imagined. Many, if not most, of us are shocked at how little pain we experience - I honestly couldn't believe it. Well, this was probably too much information. Try not to worry too much. Get the surgery over with so you can start feeling better. All the best, Matt erc133 wrote: > > Hello. > I was just told today that I have a cholesteatoma. I've NEVER had an > ear infection in my life! It started with ringing in my left ear back > in March (it is now Sept.). I saw a doctor about it and he said if it > didn't go away in a few weeks to go see an ENT doctor. I finally saw > an ENT dr. in July. They said to take allergy pills and see if it went > away. By this time I had started to lose hearing in the left ear. > Nothing helped. Finally last week they did a CT scan and told me today > that it is a Cholesteatoma. They said that it looks like it is just > starting off and that I'm lucky to catch it so early. They said that > most people don't catch it from only hearing loss like I did. Is this > true? Did any of you learn of your problem from only hearing loss? > Anyway... now I have to have surgery and I'm really scared. He said it > will take from 1-4 hours depending on what he finds once in the ear. > This whole thing just freaks me out. He said after the surgery that I > shouldn't have any problems with this again. > So... tell me about the surgery... should I be scared? Is it better, > worse or the same as what you thought it would be? How long did it > take? Would you suggest traveling to have the surgery done at a better > hospital with more experienced doctors? > Any kind of advice, or stories will help! > E > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 I am going to another doctor today for a second opinion. His nurse told me on the phone today that a lot of times this can be treated with out surgery. Do you know anything about this? I don't know if it would be better just to have the surgery to get it over with and not mess around. Thanks for the link... I'm going to check it out now. From: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2010 Report Share Posted October 3, 2010 I don't think the nurse fully understands the disease. What kind of a doctor is this? We keep hearing from people that come across medical personnel that tell them surgery isn't necessary ... then they're corrected eventually and wind up with surgery if they really have the disease. The only treatment that I've ever heard of is surgical removal. There are a couple of doctors that look in our conversations from time to time - perhaps they'll have the time to comment. Matt On 9/23/2010 10:55 AM, Witmer wrote: I am going to another doctor today for a second opinion. His nurse told me on the phone today that a lot of times this can be treated with out surgery. Do you know anything about this? I don't know if it would be better just to have the surgery to get it over with and not mess around. Thanks for the link... I'm going to check it out now. From: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2010 Report Share Posted November 25, 2010 >Posted by: "librarylady2" sharalynlu@... librarylady2 >I'm heading back to the surgeon today to discover what the next step >will be. My first surgeries are from 50 years ago, (I don't feel that old), >and my last was 25 years ago. It seems that this may have been the >trouble then, but was never given this term. I was always told that I >had infections following a bad case of measles. Does anyone know >how long the cholesteatoma diagnosis has been around? I've seen it suggested several times that this was the condition which caused the death of Wilde - although in his case this was almost certainly down to the rudimentary and experimental surgery he underwent to try to cure him. So I think the answer to your question is that the diagnosis has been around for a goodly while ! , Milton Keynes, UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2010 Report Share Posted November 25, 2010 I've seen it suggested several times that this was the condition which caused the death of Wilde - although in his case this was almost certainly down to the rudimentary and experimental surgery he underwent to try to cure him. My understanding is that Wilde died of suspected syphilis while imprisoned and that the Cholesteatoma diagnosis was a posthumous finding discovered after research by UCT (University of Cape Town) academics here in South Africa. Our ENT told me this and he works at the UCT Academic Hospital I can find out more if you like...? On 25 November 2010 14:54, <biffo1963@...> wrote:  >Posted by: " librarylady2 " sharalynlu@...  librarylady2 >I'm heading back to the surgeon today to discover what the next step >will be. My first surgeries are from 50 years ago, (I don't feel that old), >and my last was 25 years ago. It seems that this may have been the >trouble then, but was never given this term. I was always told that I >had infections following a bad case of measles. Does anyone know >how long the cholesteatoma diagnosis has been around? I've seen it suggested several times that this was the condition which caused the death of Wilde - although in his case this was almost certainly down to the rudimentary and experimental surgery he underwent to try to cure him.   So I think the answer to your question is that the diagnosis has been around for a goodly while !   , Milton Keynes, UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2010 Report Share Posted November 25, 2010 Thanks to all, you've put a new perspective on this diagnosis. I need to do some research. Baltimore, MD > > > > > > > > > >Posted by: " librarylady2 " sharalynlu@... librarylady2 > > > > > > >I'm heading back to the surgeon today to discover what the next step > > >will be. My first surgeries are from 50 years ago, (I don't feel that > > old), > > >and my last was 25 years ago. It seems that this may have been the > > >trouble then, but was never given this term. I was always told that I > > >had infections following a bad case of measles. Does anyone know > > >how long the cholesteatoma diagnosis has been around? > > I've seen it suggested several times that this was the condition which > > caused the death of Wilde - although in his case this was almost > > certainly down to the rudimentary and experimental surgery he underwent to > > try to cure him. > > > > So I think the answer to your question is that the diagnosis has been > > around for a goodly while ! > > > > > > , > > Milton Keynes, UK > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2010 Report Share Posted November 25, 2010 This article might be of interest to those interested in the history of the disease. - Matt Otol Neurotol. 2001 Nov;22(6):723-30. Knowledge about cholesteatoma, from the first description to the modern histopathology. Soldati D, Mudry A. Ear, Nose, and Throat and HNS Specialist, Via Ramogna 2, CH-6600 Locarno, Switzerland. Abstract OBJECTIVE: The aim of this study was to understand the historical development of the knowledge of cholesteatoma. MATERIALS AND METHODS: Review of the literature from 1683 to 1999 concerning the date-related knowledge of cholesteatoma. RESULTS: In 1683, Duverney first described a temporal bone tumor probably corresponding to a cholesteatoma. Until 1838, when Müller coined the term cholesteatoma, nothing new about this condition appeared in medical publications. After 1838, three main theories about the pathogenesis of cholesteatoma were published. Virchow, in 1855, considered cholesteatoma to be a tumor arising from the metaplasia of mesenchymal cells to epidermal cells, growing then as tumoral cells. Gruber, Wendt, and von Troeltsch, in 1868, considered cholesteatoma to be the result of a metaplasia not of bone cells but of tympanic mucosa cells into a malpighian epithelium. Politzer, in 1869, assumed that cholesteatoma was a glandular neoplasm of middle ear mucosa. Bezold and Habermann, in 1889, considered cholesteatoma to be the result of migration of the external ear canal epidermis into the tympanic cavity via a marginal perforation after acute or chronic otitis. It took 40 years of discussions about these three theories to finally confirm that Habermann and Bezold were correct. CONCLUSION: The knowledge of cholesteatoma has evolved with other medical branches. As otologists began to monitor their patients in vivo, not limiting their observations to temporal bone dissections, the genesis of cholesteatoma became well understood. Today, with immunology and new histopathologic techniques, it is anticipated that we will learn much more about cholesteatoma. PMID: 11698787 [PubMed - indexed for MEDLINE] Jane Fraser wrote: > > > I've seen it suggested several times that this was the condition > which caused the death of Wilde - although in his case this > was almost certainly down to the rudimentary and experimental > surgery he underwent to try to cure him. > > > My understanding is that Wilde died of > suspected syphilis while imprisoned and that the Cholesteatoma > diagnosis was a posthumous finding discovered after research by UCT > (University of Cape Town) academics here in South Africa. Our ENT told > me this and he works at the UCT Academic Hospital I can find out > more if you like...? > > On 25 November 2010 14:54, <biffo1963@... > <mailto:biffo1963@...>> wrote: > > > > > >Posted by: " librarylady2 " sharalynlu@... > <mailto:sharalynlu@...> librarylady2 > > > >I'm heading back to the surgeon today to discover what the next step > >will be. My first surgeries are from 50 years ago, (I don't feel > that old), > >and my last was 25 years ago. It seems that this may have been the > >trouble then, but was never given this term. I was always told that I > >had infections following a bad case of measles. Does anyone know > >how long the cholesteatoma diagnosis has been around? > I've seen it suggested several times that this was the condition > which caused the death of Wilde - although in his case this > was almost certainly down to the rudimentary and experimental > surgery he underwent to try to cure him. > > So I think the answer to your question is that the diagnosis has > been around for a goodly while ! > > > , > Milton Keynes, UK > > > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2010 Report Share Posted November 26, 2010 This is fascinating information. Makes me happy to live in an era of antibiotics and pain killers. --- In cholesteatoma , " Quote Link to comment Share on other sites More sharing options...
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