The Second Cochlear Implant

Hi again everyone. I know you’ve been waiting with baited breath for my follow-up blog about my second implant. So, not being one to disappoint my adoring public, here goes!

As I’ve said before, I had my second surgery on my left ear in early February 2014… on a Saturday (Jeremy Hunt, please take note, that looks like a 24 7 NHS from where I’m sitting). The surgery went really well—so well in fact that the consultant let me leave on the Saturday night. One issue we were worried about before surgery, was how I’d hear for the 24 hours or so when I had the bandage round my head, as we thought the magnet wouldn’t be strong enough to attach my right implant to my head. Fortunately, I seem to have either a really strong magnet or a really thin head and, although it wasn’t very secure, it stayed on… meaning that within an hour of waking up, I was able to listen to 5Live to check the football scores… priorities eh? In the interest of adding some ‘colour’ and ‘period detail’ to this blog, I’ve googled and can tell you that my team lost 2-0 to West Ham!

So, I then had the 3 week or so wait to be switched on. We thought that as, prior to getting implanted, my left side was my better side; I’d adapt quite well to the implant and be able to hear at least as well, if not better, with that one than with the one on my right. Twas not to be! Even after a number of trips to the hospital for mapping where various settings were fiddled with, I still don’t hear as well on my left as on my right. The sound seems to be slightly echoey. To get it in to context though, it’s still a million times better than how I was hearing with my hearing aid on that side, so a huge result for me.

The reasoning behind giving blind people 2 implants is to help with direction of sound. This has certainly helped me in terms of locating the direction of sounds and, although maybe not quite as successful as my first implant, I definitely don’t regret having 2!

The Long Awaited Next Post!

Well, they say that good things come to those who wait, and, you’ve certainly been patient! When I said I’d update the blog back in January 2014, I didn’t expect to leave it for 18 months before re-commencing. The description of the blog states in large, friendly letters that it is a deafblind man’s journey with a cochlear implant… or something like that anyway. Well, if this blog is a journey, then it’s one with a sizable delay. It’s kind of like I let Southern Trains run my blog for me isn’t it?

“We apologise for the delay to the next blog, the reason for this is general laziness on the part of its author. We apologise for any inconvenience caused and normal service will now be resumed.”

To be serious for a moment, that is part of the reason. When I left the story, I was about to go under the knife for my second Cochlear Implant.  Despite the silence following this post, the blade didn’t slip and I’m still hear, now the proud wearer of 2 Advanced Bionics Cochlear Implants… and very swish they are to! I’ll be honest, another part of the reason for stopping writing was just that I was so busy hearing new things and enjoying life, that I didn’t really have the time or inclination to sit down and right about it! One of the things that made me begin blogging was as some kind of way of getting what was happening to me clear in my own head and I think that, subconsciously I felt I’d reached that point. There was also my usual lack of self-confidence kicking in and making me think that no-one would be interested in the ramblings of an overweight deafblind man living near London and writing terrible gags about under-performing train companies.

Now, though, you lucky people, you’ll be pleased to hear that I’m back, kind of like Michael Gove, just when you think I’ve vanished without trace, I pop up with a smug grin on my face and stab a colleague in the back. (For balance, I’ll insert a labour party joke in to a future blog to show that this blog is politically neutral).

I decided to pick up my pen again as it were because the more I’ve thought about it (and been nagged by my wife) I think the story wasn’t really finished. It’s also fair to say that, despite having and loving my implants for 2 years or so now, there are still many difficulties and frustrations that I want to explore/get off my chest/moan about! The final reason is that, I am quite enjoying this—it’s very cathartic. There aren’t many opportunities for someone to talk about themselves uninterrupted and I fully intend to seize the moment!

To bring the story up-to-date then, my second surgery for my left Cochlear Implant went well—although the experience with implant number 2 wasn’t as smooth as with implant number 1 which is something I’ll write about in a future post. I mentioned before that I was volunteering for Sense and I am now fortunate enough to be working part-time for them, again, more to follow on this.

Well, I think that’ll do it for my come-back post but don’t forget to follow me on my new twitter feed that I’ve set up for the blog (aren’t I the professional?) @DeafBlindBlog2.

Now I’ve started, I’m in it for the long haul, strap yourselves in and join me.

Implant number 2 coming up

Firstly, can I take the opportunity to wish readers of the blog a happy new year—albeit a very late one!

I just thought I’d update the blog with a couple of things.

Everything is still going really well with the implant, it feels like I’m hearing more and more— though I think I’ve now reached the limit of what I’ll be able to hear with just the one implant. Christmas was great. I really felt I was able to play a full part in the family celebrations this year. I was even able to hear and enjoy (sort of) the traditional James Bond film! The audio description caused some amusement amongst my wife’s family- “James and his female companion enjoy a post-coital cigarette” was a highlight!

I now have a date for my second cochlear implant, this time on my left side. It will be on Saturday the 1st February sometime in the afternoon. It was originally going to be the 14th of February (very romantic!) but the consultant brought it forward. I’m looking forward to getting the second one done. I’m much less nervous about it, as I know what to expect this time!

Since I last posted, I’ve started volunteering 1 day a week for Sense. I’ve mentioned Sense before—they are the main deaf/blind charity in the UK:  www.sense.org.uk
I’m assisting their technology team—helping with enquiries and writing posts on technology for their blog. I’ll write more about this in the future and share some of my postings.

Guest post from my wife #2

Steven asked me to write another post as he thought people might be interested in hearing about his progress since having the implant, from someone else’s perspective.

It’s been a couple of months now since the operation and I find it difficult to clearly explain how enormous the change has been for the two of us! After the second day of switch on, the progress was rapid. The audiologists and rehab team were very surprised by it. I was less so, perhaps because I have nothing to compare it to, and also because I always believed that Steven’s blindness would force faster progress, as he wouldn’t be able to lipread.

So what has changed? Well the first thing that happened was that Steven stood at the top of the stairs one day and called me. He asked me something and I replied without thinking, but he heard. I was astonished! We carried on talking like that for a little while, just for the novelty! Next I started to notice Steven hearing the tv. He took great delight in repeating to me some of the dialogue that he had picked up. My dad took Steven to one of the rehab appointments, and Steven stayed the night with my parents on the day before. He gave my mum the shock of her life by suddenly answering one of the questions on her favourite quiz show “The Chase”! She poked my dad and announced “He’s hearing this!” much to Steven’s amusement 🙂 Tv listening is even better with the Phonak tv Link, an amazing little gadget which Steven is going to do a post about soon. More and more of these things have been happening and we’re now starting to forget how difficult everything was in the past!

An unexpected but understandable side-effect of the implant, is that Steven’s energy levels are significantly better. He no longer needs extra sleep during the day, because he isn’t straining to hear everything and exhausting himself. Another is that he just feels more part of the world. He can hear and join in with banter, for example chatting with the lady at the train ticket desk and joking with the man at our local post office. That was something which used to really bother him before, the fact that people might think him rude, or that they would be embarrassed and unwilling to repeat what they had said. This has been strange for me, as I am so used to repeating everything that anyone says. Now Steven regularly says, “Yes, I heard!” when I do it out of habit. We need to come up with a signal to indicate when I should do it, as occasionally in noisy situations, he still needs me to, although it’s rare! This has given him confidence, and he recently insisted in going to the door to collect a take-away we had ordered, and easily spoke to the delivery man 🙂

If I was to try and say what I love most about the impact of Steven’s implant, I would probably pick out two things. The first would be conversation. I love that it has allowed him to chat to his mum and my family more easily, as well as casual chit-chat with people he encounters when he’s out and about. It’s also nice that he can chat to me more easily in slightly noisier situations, like restaurants. The second would be how much it has opened up his world. Before the implant, he was able to access the world only via his amazing Braille display. So many things that he enjoyed were lost to him. Now, he has regained many activities: talk radio, football commentary, watching some tv, listening to live darts, listening to the news, listening to podcasts, as well as hearing the screen reader on his computer more easily. Perhaps most important of these things was listening to audiobooks. I remember crying when Steven told me one day that he really couldn’t hear them any more, especially when it was so bad that he cancelled his Audible subscription. It makes me really happy that he has that back.

So what’s still hard? Very noisy situations, or a lot people chatting are both still tricky, although nowhere near as much as before. Music is difficult, although he can get some enjoyment from it. Direction is also still tricky. He is often not sure where I am from my voice, something which will change when he has the second implant. He also still struggles with strong accents.

All in all, the implant has made a huge difference to Steven’s life, and by association, mine and I will always be grateful to all those who got us to this point.

Progress since mapping

I thought it was high time for me to update the blog again with my progress since my first mapping session. I’ve spent the last few weeks just practicing listening and learning to use the implant and it’s been pretty amazing to be honest.
I’ll break down the things I’ve been hearing, into a list to keep things clear.

Environmental sounds:
When I’m out and about, I’m able to hear a lot more of the sounds around me. I can hear traffic, birds singing and people talking nearby among other things. I can also make out many of the announcements at the train station/when I’m on a train.

People talking:
I mentioned last time that I’ve been able to hear people talking much more clearly than when I had my hearing aid in that ear, and this has continued. It is particularly nice when I’m able to hear a voice that I previously struggled with. I’ve also been able to hear staff in shops/doctors receptionists etc. I’ve been out for a number of meals out with Victoria and these have been good practices. In the past, the only way I could hear Victoria in a restaurant was if she sat right next to me and yelled at me! 😉 Now, however, she is able to sit opposite me. It’s been a case of experimenting with the various settings I have to find the best one for noisier situations. I found the ‘zoom’ setting was great for the restaurant as it concentrates the microphone on sounds coming from in front of me, lowering the sounds behind me. The next big test will be to see how I get on when I’ve out with more than one person—that’ll be more challenging I think.

Listening with the ComPilot:
Previously I’ve talked about the Phonak ComPilot which connects to Bluetooth compatible devices and transmits the sound direct to the implant. I’ve been using this to listen to the radio via my phone and to audio books either on my phone or laptop. This has been great—It’s wonderful to just be able to listen to something without it being a struggle. I’ve been listening to a lot of talk radio to hear lots of different voices and subjects. I enjoy it, but the downside is that I am a bit bored of hearing ‘Dave from London’ ringing up to moan about immigration and to urge us to vote UKIP at the next election! Think of it as ‘Daily Mail radio’! I’ve also been listening to a lot of football commentaries and whereas previously I often couldn’t make out the commentators voice above the crowd noise, I can now easily hear almost every word.

Listening to the TV:
This is the latest thing I’ve been trying out. I recently purchased an accessory called TVLink (early Xmas present from my mum- thanks mum!) which again, is made by those clever folks at Phonak. For anyone interested, here is the link:
http://www.connevans.co.uk/product/4177263/3PATVLINKS/Phonak-TVLink-S

The TVLink plugs in to the back of your TV and transmits the sound to the ComPilot which I’m wearing, enabling me to have the TV sound direct to the implant! Before the implant, it wasn’t possible for me to hear the TV, even when the volume was turned up, so being able to listen again is pretty cool. I’m never going to be a couch potato watching hours of mindless cooking programmes etc, but it’s nice to be able to watch stuff if I want to. Last weekend, I watched X-Factor for the first time in years. Now, I’m unsure whether the terrible singing was due to my implant, or because they are all tone-deaf cretins… I’m guessing it is the latter!

I’ll blog again soon (no really I will) to update you on my second mapping session which took place last week.

A week after switch on

Well, it’s been nearly a week since my cochlear implant was switched on last Thursday and, in terms of what I can hear, it has been quite a week!

 

Last time I mentioned that the adjustments the audiologist made to the implant on the second day of switch-on made a huge difference to what I could hear. Since then I’ve been able to have conversations with Victoria without my hearing aid in the other ear and can often hear her even when she is some distance away. The hearing therapist had given us homework, similar to the exercises I outlined in my last post and I am now able to hear the words easily in nearly all cases. While I could hear Victoria’s dulcet tones (she told me to say that) very easily, the test would be whether I could hear other people speaking. So,  we were interested to see how I would get on when my PA came to work on Monday as I’ve often struggled to hear her more high-pitched voice. Well, after a couple of minutes of being freaked out by how deep and manly she was sounding through the implant (!), I could hear her just fine. I was able to chat to her in the car, which I haven’t been able to do previously, and I could even here some of what the guy in the shop was saying to me, which is a definite improvement.

 

I bought a pair of cheap headphones so that sound from my radio/computer etc could be brought directly to the implant. The way the implant is designed makes it easy to put a pair of headphones over the top, and straight away I was able to hear a football match on the radio. I couldn’t get every word, but I could follow the gist of what was going on. I listened to another couple of games the next day and it got even better. I’ve also been experimenting with audio books and talk radio to see how much I can hear, and, the answer at the moment is pretty much everything. Music still sounds pretty horrible but I haven’t spent much time getting used to that at the moment. All in all, I’m really pleased to be doing some things that I really enjoy, but haven’t been able to manage for quite a while  🙂

 

The headphones are only a temporary measure. When the stuff from Advanced Bionics finally arrives at the hospital, I’ll be able to use something called the ComPilot. This clever little thing is warn around my neck and can be paired with my Bluetooth devices, i.e. my Iphone and laptop. This will send the sound directly to the implant which should improve things even more.  If you’re interested, you can find out more here: http://www.phonak.com/com/b2c/en/products/accessories/compilot-tvlink-s/overview.html

 

I’m very lucky that the audiologist at my hospital negotiated hard with Advanced Bionics and persuaded them to provide the compilot as standard to their patients. Great news for me, as it’s not cheap!

 

I’m hoping it will be available when I go for my first mapping session on Friday. I’ll update the blog on Saturday with how that went 🙂

The big switch on!

Firstly, an apology for being very slow in updating the blog—it has been quite a few days!

My switch-on was scheduled for 1.30 on the 19th September so my wife and I travelled down from Buckinghamshire at lunchtime to give us plenty of time. After braving the tube and a little walk in the rain we arrived at the hospital and went through to my appointment. Unfortunately, the actual sound processor I was going to have hadn’t arrived from the manufacturer (Advanced Bionics) yet, but they had another one (same make and model) that I could use in the meantime. The only difference was that it was not the colour I had asked for… not that that really matters to me! 😉

The first step was to fit the processor which was connected to the computer. The electrodes were tested and I heard a variety of beep sounds at different pitches from quite low to quite high. There are 20 electrodes in all and the audiologist was testing a few at a time so this was fairly quick. She then switched it on…

I have to admit here that my first impressions were… well… underwhelming. While I’d tried to keep my expectations low, it was hard not to hope for miracles! Everything sounded muffled and pretty awful quite frankly. The audiologist cranked up the volume a little which helped but it still wasn’t great. Thinking back, it was probably better than I thought it was at the time. I could hear voices but it was like they were mumbling. My wife says that she could tell that I was hearing more simply because she wasn’t having to repeat everything that my audiologist said anymore. We went for a little walk around the hospital to hear different noises and I could hear various sounds such as footsteps, the lift etc. The audiologist had given me 3 different programmes to play with (there is a maximum of 5 available). The 3 I had were simply louder volumes. She said that in the 24 hours between my switch-on and my second appointment, I’d probably go through those programmes, as my brain got used to the sounds and wanted more. She disabled the volume for the first day (presumably to stop inexperienced users turning it up and blowing their heads off)!

So then it was the journey home. We just avoided rush hour and had an incident free journey home. On the tube, I could hear little snippets of the announcements. For example, I couldn’t hear the name of the station we were at, but I could hear things like ‘this is the Bakerloo line, change here for the Jubilee line’.
During the course of the evening, I tried various things like listening to music, audiobook, radio and computer. Music was fine. I could recognise songs that were familiar to me. The audiobook, I could hear some words but not all. The radio was just noise. I couldn’t make out words. My computer sounded slightly different but I could hear what my screen reader was saying. All of these things were out loud as I didn’t have suitable headphones.

The second day of switch was more exciting for me, as I turned a corner during my second session. The audiologist changed the volume settings and added several programmes of volume for me. This made a huge difference to me and I found that I could hear the audiologist with just my implant, and hold a conversation with her. Again, we went for a wander to get a drink and I started to be able to identify sounds like lift announcements. I also became more aware of environmental sounds- asking my wife what the noise was, saying it sounded like a trolley. In fact it was one of those large commercial wheelie bins, so not far off!
I then had my first rehab appointment. The speech therapist was very keen for me to take things slowly, but laughed when she found out about all my experimenting! She tried a few simple things with me like making sounds and asking me to say whether there were one, two or three of them. She then said some words and I had to say whether they were long or short. She seemed quite impressed when I started to tell her what some of the words were, and said I was showing off! She then showed my wife a category exercise, where I was told a category like flowers, and then had to repeat each word as it was said (rose, daffodil etc). She also suggested that I listen to Victoria read a book while I follow it in Braille.
I went off home, feeling really pleased with my progress, and enjoyed repeating to Victoria all the train announcements, as I heard them! It was a long day but I felt that I had a great result.

Guest post from my wife :)

Steven and I occasionally chat about what amazing innovations and medical progress might be made in the future. I always say that if there was the option to give him sight and the option to restore his hearing, I would choose sight. This is because I would love the safety that would provide him with, and the freedom. Steven strongly disagrees and says that he would always choose hearing. The first time he told me this, I was quite surprised, because to me, it’s his blindness that creates the most challenges. Once he explained it though, I completely understood. He has never known sight, and has learned to manage without it right from the start of his life. His hearing however, he didn’t lose until his mid twenties, and he misses it very much.
He talks fondly about how much he used to enjoy audio books, and how when he was listening to a good one, he would listen to it non-stop for most of the weekend. He also used to enjoy tv series like Blackadder, and listening to football commentary and music (though, as far as I am concerned, he has rather questionable taste. Right Said Fred- noooo!). Even in the time that we have been together, I have seen the amount of time he spends doing these things dwindle to virtually no time at all. He occasionally can manage to hear some football commentary but it’s a strain, and he can’t listen to audiobooks at all now. I think we were both concerned about how much his world was narrowing. It was upsetting for him and I found it a terrible thing to watch at times. Norrie’s is a cruel thing in that way. It was a great relief that we had started on the journey towards a cochlear implant last year, and that we were finally getting somewhere! It was in this sort of limbo period that Steven discovered the wonders of a Braille display/iPhone combo, but that deserves its own dedicated post!

Several people have said over the last couple of years, that they think the fact that I am a primary school teacher is one of the things that makes us work as a couple. I suppose it’s true that I am used to being patient, used to thinking ahead to spot difficulties before they happen. Perhaps I also have more experience of disability and additional needs due to my job, so those things do not faze or worry me. If those things are bonuses in our relationship, then that makes me happy, because I love my job and I love my husband, and it’s nice that the two things are mutually beneficial. I talk about Steven often to my class, and he has visited the school to talk to the children about being blind, using technology, getting around and reading Braille. They are interested in the things that he can do and how he does them. They were fascinated by the idea of him making his own sandwiches in fact one little girl was horrified that I “let” him use a knife, but others were confused as to why he couldn’t drive! He’s something of a celebrity to them and one of the children even gave him their smiley face sticker and told him that he couldn’t take it off.

My hopes for the future are that I will see Steven being able to listen and participate more easily in conversations with one or two people. He’s a sociable person and enjoys chatting, and it’s frustrating for him that he can’t. We do our best in restaurants, and when we’re in large groups, with me repeating what people say to him (he tunes into my voice better) and by using some deaf blind manual signing. It’s tricky though, for me to keep up with the conversation as well as make sure that Steven knows what is going on, so I’m not always able to provide him with as much information as I would like. I also hope to see some of his favourite activities returning over time, especially listening to audiobooks, but I have no illusions that he will be able to hear everything, or that it will be an easy journey. I feel excited for him when I think of switch on and the rehab and just the idea of the possibilities ahead. I tell him that he’s lucky that he has his own personal tutor to help him with his rehab homework. He’s not so sure! He’s worried that I will be something of a hard taskmaster, but it’s all for his own good 😉
I feel very proud of how much my husband has achieved, and how he has faced all the recent challenges. It must be his time now to get something positive back.