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Cholesteatoma Stories And Cholesteatoma Infomation



A cholesteatoma cyst consists of desquamating (peeling) layers of scaly or keratinised (horny) layers of epithelium, which may also contain cholesterol crystals. If untreated, a cholesteatoma can eat into the three small bones located in the middle ear (the malleus, incus and stapes, collectively called ossicles), which can result in nerve deterioration, deafness, imbalance and vertigo. It can also affect and erode, through the enzymes it produces, the thin bone structure that isolates the top of the ear from the brain, as well as lay the covering of the brain open to infection with serious complications. A history of ear infection or flooding of the ear during swimming should be taken seriously and investigated as cholesteatoma should be considered a possible outcome.

A Cholesteatoma Story

Hi, my name is Jeff Pittman and I'm the creator behind www.cholesteatoma.net. I created the site after I realized there is a need on the Internet for people who have had an experience with a cholesteatoma in the past or are currently in the battle. The purpose of this site is to bring together people for encouragement, for finding the best doctors, and for people to know that they are not alone. My cholesteatoma experience began when I was a junior in high school. I noticed a persistent dizzy-ness and pain coming from my right ear. The doctors told me it was nothing and one of them even said I was making it up. I was on IV antibiotics for two weeks before a CAT scan was finally done and the c-toma was discovered. My advice to anyone who in the battle right now is to be very upfront and find a surgeon who has performed many c-toma operations. My hope is that though this website people can share information and become more informed and encouraged! I encourage everyone who has had an experience with c-toma to post their experience so that others may be encouraged! Thank you all for contributing and check back often as I will be updating the site as more people submit their stories! Thanks!  Here is another story from Ronald, who had experience with a c-toma:

I didn't know what cholesteatoma was until recently. I still am not fully aware of the total facts, just started doing a search on the web about it. In fact, that is how I found this site. but here's my story. Being in the US Air Force for the past 5 or so years I have gone through annual check ups with our medical techs every year. This is a mandatory routine done once a year. And it seems that just like clock work I also end up either with a sinus cold or "head cold" at the same time I am scheduled for these annual appointments. This has gone on since 1998 since I arrived in Europe, hence one of the reasons why I have these "head colds" - the weather is usually around 45-50 degrees F. Part of these annual check ups require a hearing test and I seem to always fail my set base-line every year. Medication gets prescribed for an ear infection and then it clears up and I pass the follow-up hearing test. On one or two occasions during the follow-up appointment the Doctor(s), because I rarely saw the same doc twice, have said that my right eardrum looked abnormal but my hearing is okay according to my "base-line" then sent me on my way.

Well, this last check up in March 2002, same thing happened, head-cold during appointment prescribed the meds and infection went away. But this Doc was a little more concerned about the abnormal appearance of my right eardrum and advised me to make an appointment with an ENT specialist. So I did and when I finally did see him he too was concerned about the appearance of the eardrum. He said it was collapsed or "Sucked in" proving to be a bad eustachian(?) tube and that he noticed a white ball like substance behind the eardrum which he theorized as a possible cholesteatoma growth but wanted a CT scan to further diagnose. I got the CT scan done and guess what, I finally got an accurate diagnoses of having Cholesteatoma, along with a collapsed eardrum. I didn't know what it was at the time but the doc did give a general description. He scheduled a surgery date for two and a half weeks (21 May 2002) after the CT scan. He went through the whole pre-operation procedures with me and said that it [the surgery] should take 3 hours minimum, no more than 5 hours, and that I could leave that same day due to the fact that the CT scan only revealed it to be only around my three hearing bones. On the day of surgery I remember getting administered the anesthesia at 0900 hours then waking up to a medical technician who was taking my vital signs at 1830hrs that same night. The first thing that I had asked him was, "Where am I?" and he said that I have been admitted to stay overnight due to the fact that the surgery lasted longer than originally planned. This was ordered by the ENT specialist (who performed the surgery) and the anesthesiologist. The next day my ENT specialist came to check up on me and explained what happened. He told me that the cholesteatoma growth was worse than what was revealed by the CT scan.


That there was actually three different growths, one around the three hearing bones, one that had migrated to the mastoid bone or cavity and one that had started growing in a pocket near the beginning of my eustachian tube. He honestly said that he did not expect the growth to be where it had been and that I was on the borderline of having permanent damage. He was a bit disappointed that the CT scan did not reveal the entirety of what he had discovered. I feel he is a good doc and that he did what he could to remove all that he was able to. I thank him a thousand times over...!! Now we are in the next stage of the process and that is waiting to heal and see if it will grow back or not. If all goes well, then I go for another surgery to reconstruct and restore my hearing which will be about 4-6 months down the road. For all those in the same boat as I am, it's unfortunate, but there is hope... For those whose situations are worse than mine, you have my sympathy, and I feel for you... Good Luck!!

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