Stories From People Who've Had an Experience With a Cholesteatoma
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Stories From People Who've Had an Experience With a Cholesteatoma
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[ Story 1 - Jeff Pittman, 18 ] |
Sandy J.
I was first diagnosed with cholesteatoma when my regular doctor sent me to an ENT. This happened after two years of recurring "swimmer's ear". I was told that cholesteatoma was what I had and in both ears and it was supposedly caused by frequent ear infection trauma as a young child. The only symptom I ever had was this foul smell with or without drainage and only when I was a teen so if I had infections as a child there were no symptoms as my mother who is a nurse wouldn't have ignored any of these signs. My brother is the one that had ear infections and pain but had no further problems. When diagnosed with the cholesteatoma it was August of 1977 and I was rushed ahead into surgery that Labor Day weekend on my right ear. The ENT was very capable and had a good medical reputation but a lot was left to be desired on the information side before and after the surgery. I wasn't sure at the time exactly what had been removed and what the exact care should be after surgery except that it was imperative that I not get water in my ear and that the damage to my middle ear and mastoid had been more extensive than first thought. I was informed about the dangers if the cholesteatoma wasn't removed but I didn't receive info on all that cholesteatoma was. I was at this time also diagnosed with cholesteatoma in my left ear also but was told it was stable and I was to keep a close eye on it should I have any symptoms I should immediately see a doctor. I had no problems until the summer of 1989 when the foul smell returned in my left ear this time with no drainage. This has been my symptom I had never experienced any pain and not always drainage with my episodes. I returned to my family doctor who immediately set me up with an ENT. A different one as my last had died (heart attack). I hadn't kept up with treatment as it wasn't fully explained to me at the time coupled with the fact the ENT was in a different town and a lack of medical insurance at the time. I again was rushed into surgery as soon as possible even given the fact that I was just 4 months pregnant. I was told it was too much of a risk to wait since the cholesteatoma was active again. And again there wasn't much info offered due to the doctor having to cover his patients and my previous doctor's patients. With my right ear surgery I had hearing of 30% before surgery and gained 20% after surgery. With my left I was at 60% before and 75% after. The tones most visibly missing were those where conversation was involved. I had no problems with my ears except for the occasional day or two a year when I would experience vertigo and of course the hearing loss. It wasn't until 1993 that I started having reoccurring ear infections first in my right ear and then in both there was a span of 1 year where every month the infection would be back and I would be into the ENT. This being my current ENT - Dr. Montgomery who has explained more to me about my condition than the two prior doctors. But what he can't explain is why now I am plagued with infections other than my ears aren't remaining dry. I also discovered through this doctor that there had been some reconstructive work done at least on my left ear. During one of my bouts of infections a plastic piece was protruding through my ear drum. I still have little or no pain with these infections and sometimes no drainage but I have been having recurring bouts of vertigo. I had gone 21/2 years without an infection and I am now having another bout and the vertigo just seems to get worse and all of this when I have had regular treatment for my ears. This is my story to date.
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