My Cholesteatoma Journey…so far…


As I sit here trying to think about where to start this personal account, I realise that It’s quite a tricky undertaking.


From as far back as I can remember (about 5 or 6yrs old) my ears have felt ‘strange’.  I can remember the pain of frequent ear infections and rocking to soothe myself as a child with offensive discharge oozing from my ears. The trips to the GP, the home visits from the GP, the antibiotic medicine ,  the removal of adenoids and tonsils, the constant popping of my ears and intermittent hearing. The promise of a solution to the frequent infections came with the insertion of grommets aged 13yrs after 7 years of suffering and again aged 15yrs.


The physical impact meant I missed school frequently, I missed out on school activities, I missed out on my education, I missed playing with friends. The expectation was always that I would ‘catch up’. This proved to be an impossible undertaking given the amount of time I’d lost. I loved swimming and as soon as the go ahead was given was always back in the water as soon as possible.


The emotional impact meant that my confidence suffered, my self -esteem suffered and my relationships with school friends suffered.  I never caught up intellectually or socially. The spiral of self-deprecation started creeping in when I was unable to keep up intellectually with my contemporaries and no longer fitted in.


However as an adult, life had been relatively uneventful in regards to my ear health.  Sure I’d have horrific congestion every time I had a cold, a head cold, a throat infection or some such and these have been way more than the average work colleague seem to endure. That in itself became a source of discussion amongst my colleagues and then doubt and disbelief about my sickness time.


In 2012 a particularly bad head cold left me with a noticeable level of hearing loss. I was referred to my occupational health department (as an employee of the NHS) who then referred me to ENT.


I was diagnosed with severely retracted ear drums and was told to ‘blow them out to correct them’ and given a steroid scalp solution to dab in the ear canal for the itchiness.


The popping continued and my hearing improved. In February 2016 I developed a wet ear. It was a little sore and made a strange sound audible to the person sat next to me every time I blew my nose. The sound I emitted sounded sometimes like a whistling kettle and other times like a Geiger counter.


My GP gave me antibiotics and asked to review me in one week. I was  then referred  to ENT once again where I was diagnosed with cholesteatoma and a perforated ear drum and still had severely retracted ear drums.


The shock I felt with the declared diagnosis during that ENT consultation made me physically shake. It came completely out of the blue. I’d never heard of it, was told it may not be just one operation and that there was no alternative to surgery and no guarantee of maintaining my hearing.


I cried on the way home in the car, I cried with a pain in my heart that I struggle to articulate. I had stopped work to help care for my elderly mother and was in the process of setting up a part time business.  I had been given a brief description of the disease from the consultant, but no written information, and so I did what every person with online access does….  an internet search.


It was so frightening. The information was difficult to understand and digest, I couldn’t quite remember what the consultant had said, was not sure that I was even looking at the right disease.  I had remembered him saying he felt I shouldn’t wait 6 months for the surgery and that it must be done to avoid further damage.


I found YouTube videos of similar operations and panicked even more. I found a Facebook page of fellow sufferers who were an inspiration, a comfort and support. But I struggled to find straight forward information consistently.


Following a pre op assessment, I was given some information about the disease and the fact that I would be treated as a day case.


It seemed barbaric to me that after a 2.5-3 hour op I was expected to go home.


On the 25th August 2015 I underwent a combined approach modified radical tympanomastoidectomy and tympanoplasty.


I’ve had numerous ops before, including shoulder surgery and gall bladder removal but this time I was terrified. There’s something about head surgery that just feels a bit close for comfort.


Post operatively I was much the same as most people I suspect, sick from anaesthesia, and in pain. Adequate pain relief was given by the staff but the brutality of being expected to get up after a couple of hours coming round from the anaesthetic,  and my failure to be able to do so made me feel like a wimp. I was very dizzy very nauseous and totally unprepared for the deafness. I came out of surgery at 12.30hrs and was ready for home with my pad and bandage removed at 17.00hrs.


The journey home passed in a haze of post op sleepiness, and I fell into bed grateful at this point that I had been discharged from the unyielding starchiness of hospital beds and strip lighting and the relief of no longer feeling that I had to try and be brave.


By three weeks post op I can report that my staples were painlessly removed. A big relief as for two weeks I was unable to sleep on my favoured side.  The graft site on my ear had dissolvable stitches but they too had to be removed at my follow up 2 week appointment. The consultant was happy with my progress and I didn’t ask any questions – why? I’m not sure.


I am now 4 months post op and it all sounds pretty straight forward so far and I believe a fairly standard recovery, however my dizziness lasted at least a week, and remains intermittent. My tongue was numb on the op side for two weeks and my taste buds remain strangely affected with food stuffs initially tasting metallic and then everything tasted of soap. It is now a persistent bitterness but the numbness has gone. I have had a throat and fungal infection which resulted in the usual antibiotic and antifungal treatment.


My deafness has caused me to cry and cry and cry. I am so convinced that I will not regain my hearing. I often felt unbalanced and disorientated, otherworldly and isolated,  vulnerable and unable to be out and about without support particularly in the early days – although at three weeks and two days I was driving myself to the local town. I have a persistent tinnitus sound like a machine working in my head and the only true reprieve is sleep. Sometimes I get high pitched sounds but mostly loud humming and buzzing. This increases considerably when concentrating or when I’m tired.


The scar site is still sore on occasion as is the graft site is also still. There have been days when I’ve been utterly convinced that I will not regain my hearing and days when I have felt optimistic. The hardest part is the slow speed of recovery and no guarantee that the disease has been completely removed or that my hearing will be ok.


I’d never felt so impatient or preoccupied than in the first two months of recovery. I have moved on but still struggle with my hearing. This may change in February (two months’ time) when I have my first MRI and hearing check. I may be given a hearing aid.


For now, I just try to get on with life. I try and adapt to my hearing difficulties and I try to stay optimistic. It’s not always easy and I tire so much more easily, because I need to concentrate so much more to compensate for the loss of hearing.


The support online has been amazing. I’d have been lost without it.