Kazzy Kan't Hear

Kazzy's Cholesteatoma

The Monster that is Cholesteatoma

It was the mid 1980s; I was in my 20s when I first started having problems - the occasional ear infection with the odd perforation thrown in for good measure.  I also suffered badly from hayfever and various other allergies (later diagnosed as allergic rhinitis) and I was diagnosed with Eustachian Tube Dysfunction when I first started showing signs of problems.  The ear infections continued – I took the antibiotics offered at the time of infection and got on with my life.  I was serving in the Royal Air Force in Germany.

By the end of 1990, I had left the RAF and was back home in England.  After many visits to my GP because of the numerous ear infections I had, I was seeing the doctors in the ENT (Ear, Nose and Throat) department at my local hospitals on an almost regular basis.

Early in 1991, I had an allergic reaction to one of the antibiotics I was prescribed to combat yet another ear infection and I also had adverse reactions (headaches, nausea, sickness and diarrhoea) to some of the other sorts of antibiotics.  This therefore limited the treatment available to me whenever I had the ear infections that still occurred all too very often and I eventually began to think that there was definitely something wrong with me.  Later that year I had grommets put in, in an attempt to reduce the number of bouts of glue ear I had been diagnosed with, but though these helped ventilate my ears for a while, the ear infections recurred, along with a further loss of hearing and clarity in my right ear.

In 1996 my hearing loss was severe enough to affect my every day life, and I was given the first of my hearing aids; soon after I started to wear it, an eczema-like irritation of the ear canal started along with infections in the external part of the ear (Otitis Externa), while the infections of the middle ear (Otitis Media) continued, as did the regular perforations.

In 1999 the Senior ENT Consultant recommended that I have a CT (CAT) scan and it was then that Cholesteatoma was diagnosed.  Surprisingly, my relief was immense: I really DID have something wrong with my ears! It wasn't that I wanted to have something wrong with them, but it was such a weight off my shoulders to actually be diagnosed with something, because for so many years I had felt that people – my family, friends and doctors – just hadn’t believed me. Now though, I had sadly been proved right.

It was important to have surgery as soon as possible to remove this cruel and devastating tumour.  Depending on how I felt after surgery, it would possibly only take a day case admission to hospital, with me returning home that night with a pressure bandage on, which I could remove the following morning. I was to be off work approximately two weeks. 

I was booked to have the operation one Friday in November 1999.  The operation to remove the tumour took around 3 or 4 hours and once I was back on the ward and more aware of things, the surgeon came to talk with me.  He examined me and confirmed that the difficulty I was having in focusing was caused by the mild vertigo I had, a result of the ear surgery.  The lower right side of my face was tingly and the surgeon explained that this was due to the fact that the seventh facial nerve had been moved around, but he didn't think it had been damaged.  (True enough, within days I had normal sensation in my face and the vertigo had gone.)  He explained that he had carried out procedures called radical modified mastoidectomy (canal wall down), tympanoplasty and ossiculoplasty due to the invasion of the Cholesteatoma.

Though the surgery to remove the tumour was successful, the goal of a clean, dry ear was never fully achieved. At one point soon after surgery, I was asked how I might feel about further surgery.  Though I wasn't sure what was being offered, I immediately declined any more surgical intervention - the memories of the vertigo and the pain immediately following the surgery were all too fresh.  I was to regret that knee-jerk decision as, over time, I suffered many further bilateral ear infections, more perforations and further hearing loss.  A couple of years passed, and I learned about the Baha implanted hearing aid system and I asked the doctors about it but sadly, I was told that I wasn't a suitable candidate at that time.

I continued to see my GP whenever I had an infection and/or perforation and I continue to have regular check-ups at the hospital for micro-suction of my ear to remove any remaining debris from perforations, and to check for any signs of a recurrence of the Cholesteatoma. I don't know where I would have been if not for their constant care and attention during these particularly trying times.  I still have ear infections and perforations, and a lot of pain (diagnosed as neuralgia - ''pain'' - which I apparently get because the surgeons have been in my ears).  A hearing test in February 2011 showed my hearing hadn't changed much in the previous three years but then in 2015, I lost a chunk more hearing.  I continue to visit the hospital to have micro-suction carried out on a regular basis to get rid of the debris and rubbish that accumulates on a regular basis and can result in infection. It's uncomfortable, sometimes quite painful, and can occasionally make me dizzy, but it's a necessary evil to keep things under control.

(To read more about Cholesteatoma and other ear problems, visit the web pages of a renowned ENT Consultant based in the south-east of England: http://www.entkent.com  Here you can see pictures (not too gory - honest!) and read about this devastating disease and other ear problems.)