A TESTING EXPERIENCE

“I think the deafness affects me more than I realise; I think it makes me more tired. I loathe parties. I attend, smile and leave.”
~  Stephanie Beacham  ~

I can sympathise there Steff!

I had heard well of cochlear implants but knew little about them. I was to become a patient in a strange hospital environment, with a speciality I was not familiar with (it had been thirty years since I last worked with ENT) and could do nothing but wait for appointments and wait for results and wait, wait, wait for everything it seemed. As a healthcare worker I tried to understand why. I knew of what went on behind the scenes, how many people were involved and what the process had to be. All specialities have their peculiarities and procedures, I was a part of my orthopaedic service and that was complicated enough but it did not do much to relieve the frustrations I felt as time ticked by.

It is not my intention to criticise any individual person, place or service. I could just as easily be one of those ‘infuriating people’ myself, who could not provide an immediate answer or response to a desperate patient. There was no reason to shoot the postman because it had taken three phone calls and a fortnight to get an appointment from someone who didn’t know what the problem was and so it was late arriving. What I want to show, is how deaf people (as a part of the disabled community in general) find life difficult through lack of simple considerations and how they can help themselves as well, by accepting the fact that sometimes there is shared fault when communication goes wrong. Both sides need to be aware and now I was on both sides at the same time.

MY PROGRESS THROUGH THE SYSTEM

I may have been referred but that did not mean I would be suitable for the treatment. First I had to be assessed. Not once but in several ways. The first was an MRI scan of my head to look at my bone structure in three dimensions. This not only allows a correct diagnosis for otosclerosis but also demonstrates its severity and physical peculiarities. These may interfere with or make surgery difficult. It can influence which ear is operated on by choosing the safest, rather than the worst hearing, ear. Sometimes diseased bone influences the containment of electrical impulses from the implant and ‘short circuiting’ takes place. Some of the implant electrodes may have to be switched off in this case reducing the signal availability. This turned out to be a possibility for me as the result was described as Swiss cheese with holes in it. Leaking of cerebro-spinal fluid (CSF) through the surgical hole was a second possibility. Having an operation so close to your brain stem is no innocent matter when it comes to infections and complications.

My ability to hear was measured in two ways. Firstly, for a measured consistent comparison, I was sat down one metre away from a sound source in front of me and told to repeat the random short sentences that I heard. It was very clinical , lacking in any kind of context or reality.  Not surprisingly my score was only fourteen percent. This was then repeated but with a video face to go with the words. Now I had a chance, and with some confidence I scored a massive eighty percent!

This convinced them I was deaf, that lip reading was my main help and that generally I was hopeless at hearing if not in the best environment for me to latch on to.

There was one more to go. An electro-encephalogram (EEG) to see if my auditory nerve was actually relaying the sound signals properly to my brain. If it was not, no improvement could be expected from the operation because it still needs the nerve pathway to take the signals to my brain.

On the day there was a dramatic thunder storm in London and rain across most of the south east of England. I went into a soundproof booth and lay down on a couch to have twenty four electrodes fitted to my head. Then in complete silence the test stimulated my nerve with hearing impulses and registered the reaction. Like many medical tests, no comment was made as to the result. What I could see was some hesitation and repeated sequences with a bit of frowning. All was without explanation. I have a very good imagination and an experience from many years of routine things that go wrong. I kept quiet and hoped all was well. On leaving the booth we stepped into the corridor outside which was under two inches of water! We made our way on tip toes to the interview room, were the water was soaking into the carpet slowly progressing across the room towards us. The paperwork was completed and I was reassured all was well and dismissed.

On the way home I wondered if my test had been influenced by water in the works. Were they sure this was me and not the storm outside that was registering on the machine?

I was now to wait until my case was put before the selection committee made up of various professional people that would be involved. I would get the answer once they had argued my case amongst themselves.