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 ] |
Melissa C.
I am a long-time survivor of cholesteatoma. From a very early age (2 or 3 years of age), I can remember suffering horrific ear infections in my left ear. My mother sent me repeatedly to an ENT only to be told that I suffered from a condition known as tympanosclerosis. Nevertheless, my mom sent me religously to the same ENT and I had several surgeries for tubes. When I was 19, the same doc decided to perform a surgery to "correct" the tympanosclerosis. Of course, since I am on this site, you can surmise the surgery discovered a new diagnosis of cholesteatoma. A 2nd surgery discovered how invasive the cholesteatoma was. All of my middle ear bones were destroyed - just gone, not there. The cyst had not only destroyed the bones but wrapped it itself around my facial nerve. I am grateful the doc was able to save me from facial nerve paralysis.So I lived with severe hearing loss in my left ear for most of my life. Family and friends were accustomed to my habit of leaning to the right to hear them. I never really knew any different. I tried to always sit up front and to the right in my classes through high school and college. In my late 20's, I began to suffer from ear infections again in my left ear. After several referrals I ended up at Emory in Atlanta for another surgery of my left ear. No further cholesteatoma was discovered, just a patch up of my ear drum. My doc decided to test my right ear for negative pressure. I was told in very technical terms from an audiologist, that I needed to "beware of my right ear". At the time, I was not cognizant of the real message the audiologist was communicating. I wish I bothered to listen. Apparently my eustachian tubes were not fully functional.Flash forward - so I got married, pregnant, and birthed a daughter. The following spring, at the age of 33, I suffered from seasonal allergies. Never did before. As a result, both of my ears clogged up with mucus. The mucus would just drip out of my ears like a drippy nose. It was a strange sensation. I began to experience hearing loss in my right "good" ear. So, I had the right ear flushed out by a "doc in the box". Big mistake!!!, I know. I blamed my right ear hearing loss on seasonal allergies. The loss seemed to come and go at the time. Then it seemed to never get better. I went to a wonderful doctor in Athens, GA, Dr. Robert Gomez, to assist me in discovering my allergy problem. He told me, after reviewing my history, that I might have a eustachian tube dysfunction. He spotted an "irregularity" on my right ear drum. A spot. A possible cholesteatoma. No!! Not my right ear. Not again!Yes, that is what it was. He referred to another ENT, one that specializes in ears. I had surgery 2 months thereafter. All bones accounted for but the incus was damaged and had to be rebuilt. In the middle of this, my husband and I, decided to move to closer to my parents. So I saw an ENT in our "new" town, who has referred me to an ear specialist. I will be scheduling the appointment this week for more follow-up.Meanwhile, I have decided to get hearing aids. They are such a blessing!!
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