Hope…..and expectation management

Copyright: alvinge / 123RF Stock Photo

Hope.  That’s the thing.  Having this operation has given me hope.  It’s given Nigel hope.  (There are two of us in this).

Both of us have said that when the answer was “yes” to an implant our posture changed.  Instead of trudging along despondently looking at our feet our heads came up.  Our shoulders relaxed.  Nothing has changed yet (indeed at the moment things are worse because I only have one functioning deaf ear instead of two) but we can see a better future and it makes a lot of difference.  When Nigel is repeating himself for the umpteenth time that day we can say….oh well….in a couple of months’ time this should be a lot easier.  Things will get better.  (Instead of only ever getting worse).

But how much better will things get?  What am I expecting?

In August the Cochlear Implant Centre held an information afternoon for six potential implantees and their families.  Nigel and I turned up not really knowing what to expect, but optimistic because the Implant Centre (the Yorkshire Auditory Implant Service, at Bradford Royal Infirmary) is a brilliant place.  Our optimism was fully justified.  First came a presentation about the implant process, the different types of devices, likely post-implant experiences and much else besides.  Whilst that was happening another staff member typed up on a display screen any questions that any of us asked, and the response, so that we didn’t miss anything.  Two sign language interpreters translated everything into British Sign Language for the two BSL users there.  Then two people who had had implants in the past couple of years spoke about their experiences pre and post op.  It was all incredibly useful and there was lots of time for questions.  (As an aside, I’ve never heard of the National Health Service doing this for any other operation or procedure.  How useful it would be if they did).

The staff stressed that implant outcomes were variable.  Some people do better than others.  Lots of hard work is involved; the brain needs training to interpret the electronic impulses it’s now receiving back into speech and other sounds.  To some extent, they explained, you get out what you put in.  Practice, practice, practice.  Nigel asked if, in their experience, anyone didn’t benefit at all.  The response was that all “their” adult onset hearing loss people fitted with implants have benefitted to some extent.  (It’s a different matter for people deaf since birth or childhood, who sometimes cannot get used to a life full of sound they have never heard).  But whilst, for example, some people find that they can regain the ability to understand speech without lip reading others still need to lip read, although they find comprehension easier with the implant.

I don’t THINK I’m under any misapprehension of how difficult things might be to begin with.  I’ve read a lot about other people’s experiences.  A good friend, Susan, has given me some notes that she wrote after her own implant was switched on in 2009.  Here she is talking about “switch on”, a few days after the event……

The audiologist then indicated that he was going to speak, but I totally failed to identify the barrage of electronic noise as a human voice.  My own reply was even worse, and my voice continues to have two separate components…..some of my “original voice” still coming from somewhere inside my head, and a very dominant, high-pitched, electronic being who perches on my right ear.”

And about a month later…..

the very high pitched whooshing noise which I had to endure for the first fortnight now has a bit more body to it, so men sound more like men than fairies.  I seem to have escaped the predicted Dalek phase but the population has become noticeably more Donald Duck–like this week.  This does, of course, apply to my own voice too.  I still have no idea what other people in shops etc are saying, and I must look utterly past it as I gaze around trying to find a person to match up with what might be speech sounds.”

Back at the information session we were all given an “expectations” questionnaire to fill in and then, at a later private appointment, I was talked through my responses.  I was right to say that I will still be deaf.  It was reasonable to assume that my hearing will be “somewhat” better.  The staff member, Jill, said that she sometimes has to spend a lot of time managing people’s expectations downwards, but in our case (she had Nigel’s answers too) the only thing she said we might be being over optimistic about was the length of time before there were significant improvements.  Both the people at the information session who had had implants said that the improvements mainly came in the first six to eight weeks.  We thought the same might happen to me.  It might, but sometimes it takes quite a lot longer than that.  We are not to be disheartened if the process is slower.

Other people’s expectations though, there’s a thing.  People can be very unrealistic about what cochlear implants can do.  It’s not surprising.  I know almost nothing about medical procedures I’m not expecting to have to face, and the media coverage of implants is usually along the lines of instant miracles.  So people I have met have often thought that I will be able to “hear again” straight after the operation.  They aren’t aware of the gap between the operation and switch-on or, more importantly, of the period of brain retraining that will then be taking place.  They don’t realise that I won’t be hearing like hearing people do (I like the description that implants provide “a sense of sound” by electronically stimulating the cochlea).  They don’t appreciate that I will still find some situations very difficult (understanding speech in groups/noisy situations will remain a challenge, for example).  They think I will have “normal” hearing again, and I won’t.

Also, most people don’t know anyone with a cochlear implant.  So one friend thought that the mechanism would be completely invisible because, after all, it will be in my cochlea which is inside my head.  But no, I’ll be wearing quite a big thing on the side of my head, actually – one piece rather like a large hearing aid and another round piece…..well…..something like this (except mine is going to be white).

Copyright: elizabethhoffmann / 123RF Stock Photo

People with longer, thicker hair than mine can successfully hide all this kit under their hair.  Being an averagely vain human I decided, a while ago, to grow my hair a little longer to see if I could disguise things but I’ve had it cut very short again, so everything will be visible.  I LIKE my hair very short.  It feels like me.  And “me” is what I’m trying to get back.

One more bit of news before I pack in for today – I’m being filmed!  In early September the Implant Centre asked me if I would be willing to be filmed by Med-El, the manufacturer of the type of implant I was having.  Med-El wanted to make a short film following an implant patient through the process, with pre-op interviews about how their hearing loss was affecting them and then further filming in the weeks and months after the operation.  The Implant Centre had been asked if they could suggest anyone and thought of me (because of the blog, I suspect).  I said yes straight away.  I think it’s a brilliant thing to have such films available for people thinking about an implant, and I was happy to help.  The film will be on the Med-El website; when it’s ready I’ll give you a link.  So into our lives came the lovely Henrique and Sebastien from Innsbruck (Med-El are an Austrian company) and Nicola and Lynne, from Med-El’s UK office in Barnsley.  Henrique and Sebastien came over in October to film Nigel and me talking about life pre-implant, and also the final pre-operation appointment with Mr Strachan, the consultant.  Then Henrique returned in November, filming me out walking with Izzy, various other “background” things, then at the hospital for the operation.  (Not the ACTUAL operation……..).  He’s coming back for “switch-on”.

 

 

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13 thoughts on “Hope…..and expectation management

  1. Thanks for this article. I’ve started writing about my experience as well and it’s great to read other similar experiences from other people.

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  2. Such an informative blog Vera. And valuable not only to those with hearing loss, but also for people such as myself who do not have hearing problems but wish to better understand the issues.

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  3. So good to have the virtual you back in the blogging world Vera – I’ve missed you and your calm, even-handed views on hearing loss and associated experiences! Once again we seem to be travelling along parallel lines, and I so value your stoicism.

    Expectations – as you say, there’s the thing. Having undertaken a stapedectomy on my right ear 10 days ago and having explained the process to my many supportive friends, their first post-op question (after how are you/how’s the recovery going?) is “So have you noticed any improvement?” No, and I never expected to at this juncture – without my hearing aids I am severe to profoundly deaf and I can’t put the aid back in til the New Year. It does get a bit trying to keep explaining this.

    And yes, some think that I will be able to “hear again” without hearing aids. If only. The plan is to improve my hearing from around -100db to -50db if I’m lucky. Looking on the bright side, that means I get to keep Elmo 🙂

    Of course in the meantime, like you, my hearing is reduced still further with only one aid. Some situations are proving very difficult – like the Christmas lunch yesterday – not to mention a 3 hour (I kid you not!) job interview one short week after the op. If I get that job, I promise I will abseil down the Spinnaker Tower in aid of Hearing Dogs – singing Mike and the Mechanics lyrics from The Living Years on the way down – “Say it loud (say it loud), say it clear (oh say it clear), You can listen as well as you hear”!!

    Sending you very best wishes for a continued recovery and a good experience at switch on. Oh, one last thing, when you’re famous, will you promise to still blog for your dedicated followers?! 🙂
    xxx

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    1. I know. It IS wearing. The other day I met a lovely woman who I was struggling to hear, so I explained about the operation but that the implant wasn’t yet switched on. “Oh wow”, she said, “is it helping yet?”. Well, no…… Deep breath, smile, explain again. (There again, maybe she had hearing loss too and hadn’t heard ME!) I have a piece of half finished writing entitled “Believe me, you have no idea” which attempts to talk about just how difficult it is living with hearing loss. And then, when we manage to decipher, they think “gosh, Vera’s doing really well” – when it’s SUCH HARD WORK.
      Finally…..can’t wait to sponsor you for the Spinnaker Tower abseil. We’ll hold you to it you know!
      Very best wishes for your own recovery. We are sisters in travail.

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  4. It’s really helpful to follow your experiences with CI Vera – at the moment, although severely/profoundly deaf, in my area my slightly unusual hearing loss pattern (greater loss in low tones, not high) means I don’t quite qualify for CI but it’s possible the criteria may change – or my level of loss in the critical high notes may increase. It seems perverse though to wish for any additional loss so I guess for now I’ll just be managing – and fact-finding on CI – just in case!

    Well done for taking on the filming role! That’ll be very useful to others I’m sure. X

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    1. Hi Teresa. I see the review of the testing regime (results originally expected this summer) has been referred for more research. Who knows what will happen. Makes sense to fact-find in the meantime but I know from experience that it’s hard to know there is something that MIGHT help, but it’s just out of reach. Keep going and keep in touch.

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  5. What a good description of your experience so far Vera. I don’t know anyone with a CI so your blog is very interesting to read, especially that people who have a CI experience different rates and levels of recovering their hearing. It was fantastic that you had an Information afternoon, I wonder if every CI. clinic holds these. I look forward to see you starring in your film role!

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    1. Hello Pat. All CI clinics SHOULD hold them; I’ve got no idea whether they do or not. Indeed the Bradford CI Centre said it was a relatively new innovation for them. They used to try to impart the same information one on one, but then decided it might be better for people considering an implant to meet other people in the same position. It certainly worked brilliantly well. Best wishes.

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  6. Hello Vera. Great to read a post from you 🙂 I am glad you and Nigel have now got some hope. I feel privileged to be able to read about your experiences and your cochlear implant journey, and I too am hopeful for you. Any improvement on your situation is improvement in itself 🙂 How great to be filmed too! You are right, it is good to have this kind of information to share with other people going through the process…I am sure you will be helping so many people. Finally, I loved what you wrote here…’I LIKE my hair very short. It feels like me. And “me” is what I’m trying to get back.’…I know exactly what you mean about trying to get ‘me’ back…I am trying to do the same, in trying to get back to a more ‘normal’ life…Good luck and lots of love.
    Looking forward to reading about your future experiences.
    – Carly

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    1. THANK you Carly. Finding you on the blogosphere is one of the best things that has happened. (Clinging on to “me” has been one of the hardest things. Still trying, though). Hey – I’m missing your blog! Are we going to get another update on your life soon? Vera

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