Sarah Playforth: My CI op, before and after

Since I last blogged, I’ve had my cochlear implant operation and five ‘switch on & tuning’ appointments.

It’s no exaggeration to say the experience so far has been painful, weird, exciting, pleasing and, most of all, surprising.

Before the operation, I went to an information meeting in November 2017, where all my practical questions were answered and we heard from someone who had a CI. That same week, I filled in a questionnaire and had an assessment to see if I was a suitable candidate.

I think these preliminaries are essential – CIs are not suitable for all deaf people for a range of reasons. In early January, I had MRI and CT scans to check if my cochlea and brain were in good shape to receive the electrode array & internal magnet.

In February, I paid another visit to be told yes I was ok to receive a CI and given a date for the operation at the end of April. Alongside these things, I spoke face to face and on line to other people who had had CIs at various times.

Their words and support were so helpful, I’ll always be thankful for them especially to Stephen Iliffe, whose blog about his CI was also invaluable. I read as much as I could about CIs, including a book about one man’s experiences* and all the leaflets and websites I could find.

I also had one session with the counsellor I’ve turned to at other tricky times in my life, to disentangle my complex feelings about why I was doing this. My husband, Charles, has been unfailingly loving and supportive practically and emotionally during the tough times.

I had interest and support from my lovely family and friends, and FaceBook and Twitter followers, both hearing and deaf.

Operation day arrived, seemingly moments after my original decision. I wore clothes that buttoned down the front in anticipation of the head bandage I knew I’d wake up with, trackie bottoms and slip on shoes to avoid bending down too much afterwards.

I’d been warned of all possible complications – none of which transpired, aside from temporary bruising and numbness of the side operated on and increased tinnitus up to switch on.

Preparation done, hospital gown donned, consent form signed. We had brought our kindles in anticipation of a wait and we read until, at 2.30pm, I was summoned. Charles took himself off for some food and to check out the travel lodge and I began my journey to – quite what, I wasn’t sure.

In a little room I hopped on to a trolley, the anaesthetist reassured me and (very gently) inserted the cannula for the knockout stuff. I looked at the time (2.45pm) chatted to the nursing student about her plans to become a midwife and then zzzzzzz.

I woke, feeling cold, in the recovery room, with a large pad on the site of the implant operation and my head tightly turban bandaged. It was 4.20pm.

The surgeon came, told me all had gone well, and shook my hand. He’d obviously finished for the weekend – it was a Friday – wearing jeans and shirt and a big smile.

One of the nurses, when I said I was cold, covered me in something like bubble wrap and blew warm air from a machine into it. It expanded so I felt as if I was in a warm cocoon – a lovely feeling. When they deflated it, I was quite disappointed.

Back in the ward, I demolished a plateful of stew and vegetables followed by apple crumble and custard. Later on, I had coffee – and several more biscuits than I’d normally eat. The care given by the nursing team was superb, they kept an eye on me and carefully escorted me on my first trip to the loo.

I felt slow and wobbly but was soon able to make it to the loo independently. I was monitored regularly and had oxygen for a few hours, then discharged at 8.45. Charles came to fetch me.

Slowly, holding his arm, I made my way to the Travellodge, where we had a top floor room. We didn’t sleep very well but the next morning, our early taxi ride through a green, sunny, deserted city to Victoria station was a lovely start to our journey home.

A fast train to Brighton, another taxi along the coast and we were home for lunch. Charles carefully took the bandage off and took photos of the wound and bruising. If anyone reading really wants to see them, let me know!

My poor ear stuck out disturbingly and I had to take one arm off my specs to wear them for the next week. The bruising stretched down my neck and around one eye and my tinnitus was horrendous. I was exhausted too. That exhaustion gradually lifted over the next week, the bruising faded, my ear, though numb, started to return to its usual place and only the tinnitus carried on, although that vanished with my switch on.

Not being able to wash my hair for a fortnight was a nuisance, but not as awful as I’d feared. After a week, I managed a good walk and within a fortnight I could do my usual long dog walks. Percy, my Hearing Dog, was delighted.

Two weeks later, I was back in London for a post op check. All was well with the operation site – the stitches were dissolvable – and I then went for an X-ray to establish the location of the implant and magnet ready for switch on in another two weeks.

Back for switch on, with anticipation but low expectations. Having been profoundly deaf since I was two, I was unaware of many sounds, other than those received via hearing aids, and was only hopeful to hear voices, if nothing else. I lipread very well and use BSL.

My personal experiences and those of my many deaf friends have shown me that these skills are hugely desirable for all deaf people, including children, regardless of whether or not they have a cochlear implant. While waiting to see the audiologist, Charles & I got into conversation with a mother and her daughter aged about five.

The daughter was having her post op check after a double CI. While Charles chatted with the mother, I signed with the daughter about my Hearing Dog, Percy – who was being his usual friendly self – and we communicated with ease.

I don’t think it is helpful to tell any deaf person of any age to stop signing or lipreading if they have a CI or to avoid using visual communication. If the CI breaks, or is lost, and there is no option for signing, that is potentially very isolating. I’m not suggesting not encouraging listening and speech, just not presenting it as the only valid method of communication.

My view is that life is much richer with a range of ways to communicate. I also accept, however, that for an adult who has grown up with only hearing and spoken language, this may not be a realistic perspective.

I also understand that many hearing parents of deaf babies want their child to communicate as they do and believe CIs will achieve this. Providing BSL and/or lipreading lessons free of charge to parents and siblings of deaf children and to deafened adults would help many people.

The operation removes any residual hearing in most cases, so is highly likely to make anyone who has it more, not less deaf, albeit with access to a high performance piece of technology that connects directly with the auditory nerve.

A CI is NOT a miracle life changing cure for deafness and its success depends on many factors. There are so many ways to be deaf, depending on age of becoming deaf, family, upbringing and schooling, contact with other deaf children and deaf adults, with level of hearing loss possibly the least crucial factor.

If the person has used hearing aids, the brain has already become used to deciphering artificially produced sounds, so doing it from a CI will usually be easier and quicker for them than for others.

If not, as in the case of babies born deaf, or people deafened later in life, it will be a harder job for the brain to adapt and take longer, although a baby’s brain is much more receptive to new signals than an adult’s.

In my own case, I had barely any useful residual hearing in either ear, so losing it totally in my left ear didn’t trouble me and I can’t wear hearing aids now anyway.

My turn – in we went. Did I want ‘the moment’ videoed? No thank you. After a lot of keyboard tapping and screen scrutiny, I ‘heard’ a low rumble, which became slightly clearer and recognisable as Charles’ scouse accented voice. Did I cry? Just a bit – it had been a year since I had heard that voice.

Was I overcome? No. Intrigued is a better word, as I began what many call a ‘cochlear journey’. A bit more tuning, presentation of a gallimaufry of extra equipment to protect the processor for swimming, for drying the processor overnight, for recharging the batteries – I have one that lasts 11 hours and one that lasts 23 hours – plus a attachment for hearing aid type batteries. Chargers for any country in the world.

All this and – just as we were considering nipping into the Co-op for a carrier bag to tote it all home – a posh rucksack.

Four days after my ‘CI ‘switch on’ (Charles said it sounded as if I was Blackpool Illuminations and wondered if I could have a ‘celebrity’ to do it) I could now hear voices, which was my main wish. I was full of anticipation about hearing my daughters and granddaughters as well as seeing them and It was as lovely as I thought it would be.

We have had more conversation than we’ve had for a year and it’s a huge pleasure to hear, as well as watch, the little one singing and signing nursery rhymes. Being able to resume brilliant conversations with the older one is wonderful too.
Other sounds continue to filter through too, but at first they were often weird and I didn’t feel the same thrill as I did at hearing the voices.

Some sounds were pretty awful to my ear. One unexpected treat was being able to hear a song that was once a favourite of mine, Leonard Cohen’s ‘Suzanne’. It made me think of yesterday’s achievements for women and a Helen Reddy song that I heard and loved many years ago – these lyrics feel right, especially in Ireland and America.

Another treat was being able listen to a double LP I used to love as a teenager on my iPad, streamed direct to my CI while doing a stack of ironing. It finished exactly as I ironed the last tee shirt. Ironing while watching tv with captions isn’t so easy!

I listened to a Beatles CD while driving and that was good too.I think rediscovery of my favourite 60s songs will be a pleasure for some time – there are plenty of them. Now a month on, after five post op appointments to add more frequencies, tune the CI to suit my needs and check my hearing/listening my CI has become part of my life, just as my hearing aids were.

I’ve not stopped signing or lipreading and I’m still a deaf person. My general views on CIs haven’t changed but it was absolutely the right choice for me and makes my life easier. I’m gradually tolerating more sounds and deciphering more when wearing it.

Some are lovely, others not so much, though tuning their reception by the CI has improved the sound greatly. I think some voice telephone and possibly even radio might be part of my future hearing.

A huge bonus for me after a year of increasingly distressing intrusive and continuous tinnitus was a near total reduction of it. I haven’t yet risked trying the waterproofing gubbins for my CI though, that all seems too much faff.

I’ve swum all my life quite happily without hearing and expect to continue to do so. There are activities where conversation is just a distraction. But perhaps if I take my younger granddaughter swimming…