Cyborg Adventures: Yes, it should be worth it!

24 12 2009

I’ve had a number of people ask why I am going for a CI. I’ve made up my mind but I’m surprised how some people see the CI as a bad thing and not a benefit. Faced with a choice of not hearing or hearing better than I do now, it’s a no-brainer. Hearing better will mean I am much less tired and stressed all the time with the effort of communication. I will be able to cope much more easily in all sorts of situations – at the moment, my limit is a one-to-one chat in a deathly quiet room – add a little background noise and I’m struggling, add any more noise or voices and I’m lost. I don’t really sign much at all and only have a couple of friends that are primarily sign language users, so if I did not take a CI then I would be faced with a real struggle to cope in every day life and having to learn sign language if I want friends I can converse with easily.

Here’s a video I came across on the experience of a non-traditional deaf person having a CI, i.e. one who is pre-lingually deaf and therefore not usually considered for implantation. Which is hopefully going to be a similar experience to the one I will have after christmas. My surgeon says so much depends on the rehabilitation process … well, I’m not afraid of hard work, never have been …. so watch this space!

And, an ASL user’s comment… follow the link to her subtitled video.

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20 responses

24 12 2009
IanIlly

Hmmm, the first one was uplifting, they made good progress after 6 months! The second vid is meaningless to me not knowing ASL (or even BSL that much!).

I am lucky in that I know through my work (lucky yet again I know to actually have a job!), several deaf people. Some are BSL users both with and without voice, others use lipspeakers and some BSL to assist and they have this support at work. I am embarking on a course early next year that will use lipspeakers as it is an interactive course so a Palantypist would not be practical. That in itself will be a new experience for me. Also, and I have moaned about this on the Ouch BB, I have at work regular team meetings with silly games that left me totally lost last time round so I am insisting on a palantypist to assist next time round. There is this whole business of confrontation with the issue that can be skirted round to some degree in everyday interactions as they mentioned on the first vid. Anyway, the point I am trying to make is I do not know anyone personally who has gone down the CI route. I know of some on the deaf boards who seem to still have difficulty with say telephones and speech in general. This is what bothers me, will it work?

24 12 2009
funnyoldlife

The second video was there for my American ASL readers.

One of the problems seems to be managing expectations of the CI. The hospital said they had to be realistic rather than optimistic, which of course they have to be, but they would only offer a CI if they think you will benefit from it, i.e. be better off than without it. This doesn’t necessarily mean you will be able to use the phone and effectively be a hearing person. I expect to be hard of hearing rather than profoundly deaf. This means daily life would be less of a struggle. Lipreading will be a lot less of a strain.

I do know 2 CI users. CI user 1 can use the phone a bit, depends on the accent and clarity. After six months with her CI, she put her hearing aid in the other ear, just to compare. The difference in quality was so great, she binned the hearing aid. CI user 2 hasn’t even tried to pick up a phone. She was referred to me by the hospital as we have a very similar hearing loss. We met for coffee at Euston train station a few months ago for a coffee, sitting outside. There was lots of traffic going past, and lots of buses. I was really struggling but she didn’t seem to have any difficulty. I asked her what she could hear at that moment that perhaps I couldn’t. She said there is a woman sitting behind me and talking on her mobile phone (with her back to me), and she then told me what she was saying into her phone. I hadn’t even realised there was anyone there, I was like ‘What woman??!’ So that was a surprise. She does know of someone who one day, without thinking, just picked up the phone when it rang at home and he understood every word.

If I achieve 100% hearing and am able to decode speech enough to use the phone, then that would be a very nice bonus. I don’t use the phone at all anyway so wouldn’t miss it if I can’t hear on the phone. The hospital said the problem is a lot of deaf people expect to be able to understand and to hear everything 100% and straightaway, but it doesn’t work like that. The brain has to retrain itself. A lot will depend on how much work I put in and how well my brain will adapt. The fact that the hospital say I will be significantly better off is enough for me – and they are being realistic, not optimistic.

If you think you might benefit from a CI, you could ask for referral and just see what they say, you can change your mind at any point. How well the CI works varies from individual to individual, and depends on a lot of things, but the CI team will be able to give you an idea of what you can expect.

On another note, team meetings and silly games at work…. haven’t your team had deaf awareness training?

24 12 2009
IanIlly

Thanks for the reply answering my points. I will look into this option as it was suggested over 10 years ago when things were a lot better for me (at least relativity). At the present time, if I have no aids in then I am relying almost 100% on lipreading and a lot of guess work – it is not a lot of fun as you know. There was a good review of this on SeeHear a while back, a young lady went through this and she seemed to benefit quite a lot though I thought her father was a bit of a drip! I think I still have the recording somewhere as well but I wonder, will age matter? You see I am extremely old, in my mid 50s but I fell like about 25!

As for work, yes they did have deaf awareness training around the time I joined 4 years back but staff have forgotten and the turnover means it is all forgotten. I asked for and got a TextPhone, it is hardly ever used (most people hang up!) but I have it as a symbol of my situation as much as anything. I will mention deaf awareness training to my diversity officer but I don’t like to draw attention to myself or make a fuss. (It really is like that – I am my own worst enemy)

24 12 2009
funnyoldlife

Sounds like you’re in quite a similar position to me. I used to hate making a fuss but now I go the other way and refuse to back down, my hearing dog has made me a lot more confident in taking on hearing people. It’s your right to have equal access, it’s not a luxury. Let me know what your diversity officer says. You can always refuse to attend team meetings until they put appropriate support in place for you. Why the hell should you attend and struggle to hear what’s going on?
I get people hanging up all the time on my textphone, it is the dustiest thing in my office, LOL. Hang on for WebCapTel – see the campaign here or on Facebook.
I am told by surgeon it’s better to get CI done when younger rather than wait, as your brain is younger and will work harder at adapting. I have another friend who has CI and think she is about 65, she thinks it’s the best thing ever. They will tell you if you can or can’t have it – I think there’s no point wondering and struggling! I thought I would rather know if it’s possible and what the outcome might be, and I’m glad I went and found out.

25 12 2009
Jeremy Freeman

Tina, Ravit and I are following this very closely – it really is a fascinating insight into how you are feeling about this.

At the moment, I’m not fussed about having a CI, but Ravit is becoming very interested – we’ve discussed the possibility that she start exploring the possibility of having a CI in 2010.

We’ll certainly be taking all your advice on board. Thanks for showing the first video – that was really inspiring to watch. We’ll be in touch with you soon.

And wishing you, Smudge and all your readers a very happy Christmas and an amazing, healthy, prosperous 2010.

26 12 2009
deaflissa90

Hey I’ve just stumbled across your blog, I sure will be starting at the beginning, I am looking forward to reading it! I am also from the UK! I am a profoundly deaf 19 year old with a cochlear implant in my left ear and I also wear a hearing aid in my right ear.

26 12 2009
funnyoldlife

Welcome to my blog! Please do let me know how you find your bimodal experience 🙂

26 12 2009
Lissa

Hello, I have not yet had time to read all of your blog but you sure have a lot of great and useful information, links I had never heard of. Good luck with your cochlear implant! I am currently being assessed for a 2nd, since I was under the NICE age cut-off when the guidance came out!! I scored 0% on BKB with my HA.
My bimodal experiences has been good so far, I got my implant at the age of ten and my right ear(HA ear) has definately worsened so hearing is decreasing in that ear. It does add a little volume to my implant since I like having as much sound as possible but sometimes I do not like to wear my hearing aid with my implant, the aid is usually quiet at times!!

27 12 2009
IanIlly

All, I include a link to this article that gives a bit of depth

http://en.wikipedia.org/wiki/Cochlear_implant

…although there is some ‘discussion’ on this.

There are lots of links as well at the end that may be of interest.

28 12 2009
Graham

Hi Lisa. I have come across your BLOG through a thread on another BLOG. Great info by the way!! I am not very far behind you it seems on the old Implant operation. I originally suddenly lost my hearing in my right ear ten years ago and have managed with one good ear pretty well up until now. In July this year I lost the hearing suddenly over night in my left ear and am now profoundly deaf. I am so new to the deaf world that I find it very difficult to really believe I am deaf!! I have a phonak hearing aid in my left ear (nothing works in my right) which is turned up to full power and this just gives me enough sound to help lip read in quiet situations………….but only one to one………..groups is a definate no no!! I have just had my scans and have my speech / language / phsyc & balance tests in Jan 2010 with my ‘final decision’ appointment in early Feb. It is interesting to read your decision on the Implant chosen as this was the one innitially I liked best. (More up to date looking). But I am wavering because so many people seem to want to slag it off. I would be really interested to find out what actually happens in the ‘final decision’ appointment because my CI team seem to give very little away. I may want to pester you with some more questions too over time if you dont mind?? I have been asked to tell my story on the DeafBlog which I will do in a few weeks, which is quite nice to think people out there are interested in how we all cope in different situations. I am self employed (in the health & fitness industry) and have been lucky enough to be able to keep working with loyal customers……………..waffling now…………sorry. Be good to hear back from you re any more info re the appointments and what goes on……….many thanks………….Graham…36yrs….Cheltenham…Glos…UK.

28 12 2009
funnyoldlife

Hi Graham – did you mean Lissa or me? (I’m Tina!). I will soon be posting a lot of VERY useful information which I’ve just gotten from Dan Schwartz, a deaf electrical engineer who knows a lot about CIs – I am going for a different one now, not the Nuke!
The final decision appointment was one where they asked which ear I wanted it on, which CI I wanted, I repeated the BKB test (I scored 43%), I went to look at the CIs and then I went for the pre-operation assessment, to save me taking another day off work just for this.

28 12 2009
Lissa

Anybody is welcome to pester me with questions. You are welcome to forward them to lissa90@live.co.uk and I will sure reply immediately!!

31 12 2009
Bluesky

I think the problem for not having a CI is the fear factor. The fear of it not working out as well as you hoped and then the crushing disappointment follows.

Also, the magnet attachment on the head puts many people off I believe..yeah I know Im Mr Vain..and others are too..lol.

I do believe that if CIs came without the wire and magnet and looked like an ordinary smallish aid then people wouldn’t be so aganist them.

2 01 2010
Elizabeth

I came across your blog this morning. I am profoundly deaf in my left ear and moderately deaf in my right ear. I thought about getting an implant for my left side. It would be nice to not have to constantly turn my head to people trying to whisper in my left ear.
Thank you for posting this. Very interesting insight in the CI experience. I am looking forward to reading more of your posts.

Elizabeth
http://ehwhathuh.blogspot.com/

2 01 2010
funnyoldlife

Collated TECHNICAL information on CIs is being posted to my Cochlear Implant page on this blog, to help CI newbies know what’s what. Please let me know if any information needs correcting.

9 01 2010
funnyoldlife

I’ve seen another video which is subtitled and in ASL, I’ve swapped it over – the lady here has a similar message. She makes an important point, that a CI does not FIX a deaf person, which seems to me to be the basic argument a sign language user has against CIs. A CI is really just a more powerful hearing aid. I won’t be hearing – I’ll still be deaf.

24 01 2010
Dan Schwartz

Tina, if you get a chance, please do check out the award-winning HBO documentary Hear and Now, which documents Paul and Sally Taylor getting cochlear implants at 65, after a lifetime of deafness. This is actually a very touching story on many levels, from Paul being sent to CID at the age of 3, to their meeting, to Paul getting his engineering degree at Georgia Tech exactly 25 years before I did (I had to get that in!), to their life raising their children, to their eventually getting implanted in 2004, after a lifetime of deafness.

The story has a mixed ending: Paul did reasonably well; but try as hard as she was able, she had difficulty, and still does to this day.

But Wait, There’s More!

I have had the pleasure of corresponding with the Taylors, and their daughter filmmaker Irene Taylor Brodsky. Sally told me that my question of “where is the auditory rehabilitation” is the most common question they receive at film screenings. In fact, the film inadvertedly documents the failure of the CI delivery system (in America), where the patient is all-too often given their hearing aid or cochlear implant with a pat on the back and little else in follow-up auditory therapy. In fact, the DVD has an extra 20 minutes of booth tests & speech therapy, so you can see how it’s done — Though judging by the results, may not have been done properly.~

25 01 2010
funnyoldlife

Hi Dan, I have seen this film. I was of the opinion that they didn’t get enough support after the CI and their expectations weren’t managed well. CI patients in the UK are not given much support either – I am told I will be given six sessions of speech therapy – which I assume is the same as traditional CI users get, i.e. those who have had hearing before going deaf. It’s not enough. It’s not enough for those who have had hearing before – I had a student (previously hearing then suffered meningitis causing deafness) in one of my lipreading classes who joined because he got so little support from the hospital that he was struggling to benefit from his CI and hoped other deaf people could give him that support. Shocking.
So I think I am not going to benefit as much as a traditional CI user would from a CI. I have balanced the likely outcome of CI against the likely outcome if I don’t get a CI, and will be much better off with one, even if I don’t get perfect hearing.

11 02 2010
Dr.V.Ramcharan

Hi Tina,

I just replied to your post about the Clock ticking test on HJ. Figured you would get it faster this way. By the way, how did Insurance in UK figure into paying for the CI? I hope it did. Uf you have to cough up the quotes Zubair got, well … you’d have to own Japan – not just speak japanese. Here’s my post:

You are so well prepared for all of this that you are entrting the “twighlight zone” of knowing too much ! You are such an awesome candidate that you cannot make a wrong choice.

I was really focussed on keeping my residual hearing when I had the first CI, and obsessed with having the “bad” ear done first. I felt I was doing pretty good with my HA in the good ear. Truth is, with power aids I had zero speech understanding on the R (bad) and 20% at best on the L (good) side.It was a shock when my surgeon said I shouldn’t worry too much about conservation of residuals on the R “because there’s nothing to conserve” Yup, I’m stone cold deaf. So I got the one CI so I was thinking that if it didn’t work well I would still have the other 20% HA side.

Within a couple weeks of getting the CI, my understanding was so good and so far in excess of my good HA side, that wearing the HA made NO difference, and in fact the difference in sound quality / pitch was distracting and impairing. Then I found out that even the CI folks I met who feel they have a poor outcome, can hear better than my good HA side. In the final analysis it would have made no difference which side was done first.

This thing will make you a basket-case with second-guessing until you are implantede. This is normal if you are intelligent, analytical and well prepared (as you are). Then once activated, I don’t care how well prepared you are, you will be shocked at the strange sounds. Then you get buyers remorse even though you know AB is best for you. And you may want to see how other CI brand patients fare. Finally, you will quickly progress beyond your wildest dreams and can the HA’s. Soon, you will go for the second CI because you are a progreessive sort of person who wont be held back once you know the best way forward. You are going to do well whatever choices you made along the road. You cannot mess it up.

In the end, this mental process is the natural progression. Enjoy it as I did, and you will have tons of fun discoveries. The whole CI process is so wonderful to experience. By the way, did I mention that for the first time in my life I found out I was stone cold deaf as a doornail ? Somehow my friends, relatives, wife, daughters (no sons) and everyone else knew, but I didn’t. And I was holding onto something that was not really there. Tick tock.

Dr.V. – Can reply to my private e-mail if you want to. Here for you anytime.

11 02 2010
funnyoldlife

Thanks for such an encouraging post, Dr. V! It’s certainly a help to know about your experience and comparisons with HAs. I wonder if, by canning the HA, I will then put the right ear at a disadvantage as it won’t be stimulated until I get a 2nd CI? Or does it not make much difference as it’s had decades of a HA already.

Our NHS pays for the CIs and all assessments etc, so I won’t have to pay a thing. Because of the cost to them, they will only give adults one CI (unless you lose your sight) and they now give children 2. They are coming around to the benefits of bilateral implantation so I’m hoping it won’t be too long before they offer 2 to adults and I can ‘do’ ear number 2. I am lucky I have got the best surgeon at the largest UK CI centre so I can’t go far wrong medically.

I agree, I think we don’t realise what we haven’t got simply because we’ve never had it.

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