I have had cholesteatoma in the same ear twice. I had ear issues my entire life. Infections, burst eardrums, hearing loss. It wasn’t until I was 23 years old and I worked at a medical facility, that I first saw an ENT Dr. I had an ear infection for a month, saw 3 different primary care Dr’s, and all of them said I had a terrible infection. One even said, “It looks like you’ve had this infection for years” and yet, they never referred me to the see an ENT.
Fortunately, a good friend of mine was over that department and got me in. The first Dr. I saw said the cholesteatoma was too extensive so he referred me to the chief of the department. Long story short, after several hours of surgery, it was discovered that the cholesteatoma had deteriorated everything in my ear. A mastoidectomy was done with a CWD. I lost all of my hearing in that ear and can only use a baha implant if I want to regain hearing. My balance has never been the same, I experience nausea on a daily basis, and struggle with communication since having this additional hearing loss. I had a reoccurrence in 2016 and the recovery from that surgery took me almost a year. However, we only get a handful of weeks off and then it’s back to life we go. So that was a major struggle that caused major depression. I am currently dealing with a double ear infection in that same ear. I’ve been on oral antibiotics 3 times in two months and am on two different sets of drops. I’ve been seeing my ENT every week so she can vacuum out the puss and fungus that grew on top of that infection. A culture was done and I’m now waiting on results. I am trying to get in to see my Otolaryngologist who did my last surgery so that I can get scans. However, it is so difficult these days to get through to speciality Doctors so I’m also waiting on a return call from his office. To top it off, they found a retraction in my son’s ear yesterday and suggested he also get scanned for cholesteatoma. So we will see where we go from here.

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