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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| NEW DISCUSSION BOARDS Please submit your stories here. This area is also for discussing doctors, treatments, and anything else realted to treating a cholesteatoma. |
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[ Story 1 - Jeff Pittman, 18 ] |
Wendy R.
I have had problems with my right ear since I was 3 years old. My doctor recommended I have tubes placed in my ear to assist with drainage. My tubes left a dime size hole in my eardrum. At 12 years of age, I was placed under anesthesia and a patch was placed over my eardrum. After the surgury (from behind my ear) I was supposed to go to my ENT and he was going to remove the packing. All I can recall is him trying to pull out dry, crusted over packing from an already very tender ear. I screamed in pain and from that moment on have been terrified of doctors, especially ear doctors. My problems continued on for fifteen years but my fear kept me from going to the ear doctor again. I always felt a fullness in my ear and would occasionally suffer from bouts of some hearing loss, as well as drainage. I later went on to become a dental assistant which was difficult as some days I could barely hear my boss because he was talking behind his mask. Needless to say, my self-confidence dwindled in the process. It wasn't until I had children that I realized I really had a problem. My husband would wake me up in the middle of the night and tell me my children were crying and I didn't hear them. I went to my family doctor who looked at my ear and said it was highly infected. She sent me back to the ENT I had as a child. Walking into that office would send me into panick mode where I would sweat and have a racing pulse. He sent me for a CAT Scan and told me I had a cholesteatoma. He would scrap at my ear and try to clean it but I left the office crying every time. He finally recommended I be put under anasthetic to have my ear cleaned. After several times of doing this he recommended I undergo a Tympano-mastoidectomy in which he cut behind my ear and tried to remove the cholesteatoma. After a painful recovery and many office visits later my ear just started bleeding for no reason. I went into his office and he told me I had developed a polyp. He removed it that day and I left the office crying again. Each time I would get upset my doctor would tell me I was just sensitive. Whatever. A little while later I went in to his office and my doctor actually threw his hands up in the air and said he didn't know what else he could do for me. My cholesteatoma was back. It was at that time I requested a second opinion and he referred me to a "real" specialist in London, Ontario. What a blessing.I have been seeing Dr. Lornes Parnes and since then he has done another tympano-mastoidectomy and has corrected what my first ENT had done or didn't do. My faith in doctors is being restored. He is so gentle with his cleanings and he actually has done two hearing tests since I've been to see him. As of my last appointment my eardrum is not healing as well as he would like so he prescribed some kind of powdered antibiotic which is supposed to dry everything up and is supposed to be highly effective. I am hopeful that it will work. I feel my hearing has improved with the last surgery but, my doctor says there hasn't been a change.I recently got the internet and when I found the Cholesteatom.net I cried reading your stories. It is so nice to know there are people who have suffered the same things as me and truly understand what it is like to have all the things that a cholesteatoma brings. I have been blessed with a very supportive husband and family but they can never fully understand. Good luck to all of you.
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