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 ] |
Audrey
My surgery for removal of cholesteatoma was a surprise. Not in such that operation but the actual discovery that this was what was wrong with me. I had suffered ear problems for about four years prior. When finally admitted to the hospital I was of the impression I had a condition described by my son's ENT as "glue ear". I expected to have maybe two stitches and simply have my eustachian tube cleaned out! When I awoke from the op and spoke to the specialist it was the first I had ever heard of cholesteatoma. To explain further...I was visiting an ENT with my son who was suffering with repeated infections of both ears. He was 2 years old then. We lived in a tropical city (Australia) Darwin. It was not uncommon for children to have ear infections with all the swimming and humidity. I had been suffering ear problems myself. Although having it syringed and treatment with antibiotics it never seemed to clear. I also felt like it was blocked and had started experiencing hearing loss. I worked on a switchboard & it was becoming quite obvious. Anyway, during one visit with my son to the ENT I mentioned my problem. He looked in my ear and said "My God you have glue ear!" (apparently what my son had...blocked tubes). He referred me to have a CT scan which apparently showed nothing but he recommended surgery to explore. This I took as meaning it was not serious and actually did not bother about seeking an operation for three years later. My husband and I had moved twice due to changes in his employment, so we arrived in Broome (Western Australia) which is a small town on the north coast. Specialists visit every three months from the city and appointments sometimes take six months. I eventually was given an appointment and on examination admitted for what I thought was to be draining of my eustachian tubes...i.e. fixing the "glue ear"! As I said earlier this was not the case. I awoke with bandages around my head and the worst headache of my life!! They had discovered the cholesteatoma and my operation had lasted four hours. Due to the extent of the damage my ear drum and bones had all been destroyed.. and removed. They also "drilled" my mastoid to clear any sign of infection. The "tumor" was as big as a man's thumb (specialist's description)...I didn't get to take it home in a jar!! Well, that was almost 8 years ago now. I have since had a second op to insert prosthesis (plastic bones) and of course check for further infection. During my first op they enlarged my ear cavity so as to allow "easy access" for further ops. My third op was just a check up again for any sign of infection. My fourth coming up soon to try again with some bones as the previous one was unsuccessful. I am not concerned as I am now aware I have to keep a check on this for the rest of my life. If I regain any hearing it will be a bonus. I miss swimming under water as I find now my balance is zilch and go into a complete spin when submerged! I have tried a hearing aide which was really a microphone on my left ear leading sound to my right. I found this uncomfortable and the cord between both ears was a pain! Kept getting unhooked. So now I find the best advantage of all this is...if I sleep on my "good ear" not much can wake me!!! On another note my son continued to have ear problems...grommets twice, myringoplasty on both ears twice, and finally this year should have a C tube removed from his right ear. Amazingly his hearing is OK. I also keep a careful eye on him and I will mention the doctors have NEVER even mentioned that he could develop C-toma. I know he could and pray he never will. My father also suffered ear problems but as far as I am aware was never diagnosed as cholesteatoma. So having said all that!!! I wish you all well and would be happy to share more with anyone. I find it can be a "lonely" disease as nobody really understands. I have been through times of severe pain since the ops...pain like a knife in my head through my ear...but no sign of infection. The latest treatment they have tried is anti-inflammatory drugs as they say I have arthritis in my jaw! (not from talking) and this in turn causes pain to my ear. It seems to be working. Well, take care and stay positive...at least we are all here to tell the story!
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