A Whole New World (Again)

Its been twelve days since switch on and its safe to say that life has taken a great new twist with the cochlear implant.

I reported in the last blog that right when they switched it on I could hear almost everything people were saying even if they sounded like they were doing the helium party trick or were auditioning for Alvin and the Chipmunks.

But switch on is just the beginning of the journey back.

In the first week I decided to try out as many situations in which to use the implant as I could.
First up, a visit to the cinema. Now as anyone with a hearing loss will know, a subtitled showing of any film, let alone a new release is as rare as a supportive Ofsted inspector, a goal for Liverpool, a motorway in Cornwall, or a win for England in a cricket one day international. Even when there is one you either have to be unemployed or   have no social life at all to go and see it as they are on at very obscure times.

With this as the case, I knew that to go and see "The Hobbit: Battle of the Five Armies" with the family, it would have to be with no subtitles. To my surprise, I found that more than 50% of the dialogue was understandable. Considering that you cannot depend on lipreading in a film as the camera always cuts to another scene as someone is speaking, or has voice overs or people speaking off camera, this again shows how amazing the implant is in bringing back word recognition and understanding.

As I stated in the last blog, one of my aims was to listen to music again as its been missing from my life for two to three years now. I experimented, as they tell you, with some familiar songs. Using my phone's you tube I played "One" by U2 and Mary J Blige. I had placed the phone on the table in the kitchen. The song sounded half decent and Bono and Mary sounded Ok apart from being transformed briefly into Pinky and Perky (those of you old enough will know of whom I speak). Later I played it again using the headphones which was an even better improvement. To be honest I felt quite emotional listening to the song again after it had been going round in my head for two years without being played.

The following Sunday there were two more musical experiences. The first in church where two carols were being sung (not at the same time). Now Christmas is a great time for these experiences because of the familiarity. We sing the same traditional songs and the songs played in shops and on radios are often the same. In church they sang the songs "Hark the Herald Angels Sing" and "O Come all ye Faithful". To my great wonderment I was able to pick out the tune (something I've definitely not been able to do for about three years at least) and sing along. Christina was a good sound test as I was able to sing in her ear to test out whether I was singing in tune. Her honest assessment was that although not perfect, it was largely in tune. Well I'll definitely take that after a week of activation!

On that same day, we went down to Canary Wharf. On the way through to get the car I stopped and listened to a busker, acoustic music is better at present as my brain makes sense of all the newish sounds so guitar and voice is definitely preferable to bands with electric guitars, drums, bass, keyboards, etc at present. Although I am aiming towards the latter. The song the guy was singing was "Ain't no sunshine when she's gone". Absolute classic and although not a song I listened to a lot before deafness took over, it was certainly familiar and pleasant. I waited till the end of the song before telling the guy how that was the first live song I'd listened to in about three years that I'd heard clearly. Emotional moment. That song is fast becoming my favourite and I frequently play it over and over in my head.

Another experience that came as a pleasant surprise was when we experimented talking on the phone. I realise that Christina and the boys will be easier to hear as their voices are familiar but to be able to hear them quite clearly on the phone was a liberating experience to say the least. Not done that for two or three years and have been depending on the useful but limiting text and email messages.

Finally I want to mention my one week tuning session at the hospital. I asked if it was possible to tune out the high helium voices but advised that this will sort itself out over the next few months as my brain remembers how things and people are supposed to sound. However, I was also asked to repeat the word recognition test.

If you remember, during an earlier blog post I mentioned that when being assessed for a cochlear implant I had to perform a test where I had to repeat a sentence read out from a speaker where I couldn't see the person speaking. You may remember that I scored 5%! Well this time the result was rather different. I heard the person's voice as clear as a bell. Result: 98%!! Then 93% when they added some noise in the background.

So all in all a great week and a half in which I have experienced lots of the amazing world of sound again. Birds, wind, music, speech...... and I am sure that there is much much more to come as I continue on this journey. I have been told that there will be lots of ups and downs along the way but the only way is up as they say and the Lord is there every step of the way with me. He has also provided amazing family and friends who continually offer their support.

Merry Christmas everyone.....and if I don't write another blog in 2014, have an amazing new year and may you be truly blessed in 2015.

Switch On Day

OK. We now come to the main event. There will of course be other blogs after this one and every blog before this one has been leading up to this. The day I hoped hearing would return in some way....SWITCH ON!

As you can imagine, I was very excited that morning. 11.30 was the appointment time so we made our way across on the Overground and Victoria lines to Kings Cross.

Just about to walk into the hospital entrance when we see a smartly dressed gentleman who I recognise as the man who made it all possible....my surgeon Professor Khalil. Now I don't normally stop people in the street but I felt this was more than coincidence. Shook his hand, told him that today was switch on. He recognised me which was nice.

Down we went to the Cochlear Implant Department and into the waiting area. Soon we were called and went into the room where the new chapter in my life and my family's life would begin....

I lip read the lady saying that she was going to put the processor on and the headpiece then play some beeps to get a comfortable volume. The first panic for me came though when she couldnt get the head piece which is the disc type thing to stick to my head. I should explain that this works by a magnet inside it which attracts to the processor thingie thats been implanted under the skin. When it wouldn't go on, I did fleetingly wonder whether it was because they'd done the operation but forgotten to put the implant in.......but then I remembered I had photographic proof in the form of the x-ray (as you would have seen in the last post.)!

All it needed was a stronger magnet because as the audiologist said: "Some people have thicker skin than others...". Was she speaking literally or metaphorically I wonder!! I also think it was my long curly surfer like hair that was in the way. So the magnet was replaced and the head piece fitted.

She played some different pitched beeps to get the comfortable volume, then we were ready........

Now I had been warned that activation might not be amazing in that some people only hear noise or metallic, computerised voices or people sounding like ducks or as one person described: "Mickey Mouse and R2D2 having a conversation in the bath room." So I didn't know what to expect....

SWITCH ON. Tinny sound......like cutlery in a drawer for a second or two then I clearly heard a voice. The audiologist was speaking and I noticed at first how high her voice sounded ....like she had done that party trick inhaling helium from a balloon! But then I also noticed that I was recognising every word she was saying! Incredible. I CAN HEAR! I even detected that she had an accent that I recognised as South African to which she sounded amazed.

It was an incredibly emotional moment for both Christina and myself. She was overwhelmed by seeing me going from understanding nothing to understanding every word. I wasn't just sitting there with a blank look on my face pretending I could hear. I had life and light and understanding written all over my face. I understand that when you have watched someone lose their hearing and with it much of their confidence, to suddenly see this is incredible. Her first words to me through a haze of tears were: "Are you OK love?"

We had lunch at kings Cross station where I was able to hear the railway announcements: " The next train at platform 5 is for Newcastle."

Back for speech and language session where I was put through a number of tests. Remember that when I was tested for word recognition before the implant I scored just 5%. From behind a small screen she was reading sentences out for me to repeat and asking questions for me to answer. To my amazement I was able to sail through all these with few mistakes. My rehab is well under way and I have been told ahead of schedule.

So all in all an incredibly successful day. Like I said, I didn't know what to expect but I certainly didn't expect to hear all the words being spoken (even if people sound like they are on helium!).

Just one more little thing which is a massive thing for me. Driving the car I was not able to look at Christina as she spoke to me from the passenger seat but heard every word. My son Joshua was telling me about his day in school from the back seat! I'm not sure he could quite believe it.

I have many aims for this journey. I know I must learn to walk before I can run but I'd love to:
1) Use the phone
2) Listen to music
3) Play music and sing
4) Watch TV and movies without the need for subtitles

I might try one or two of these things this week! But for now I'll be content to praise God for the incredible start to this brand new chapter. He has healed and given back my hearing in the most incredible way. So to finish here's a great saying:

"To Him who is able to do immeasurably more than all we can ask, think or imagine. To Him be the glory." Ephesians.

The bit in the middle......

So, surgery over. Recovery begins.
I still had the big Mr Bump bandage on the next day but the surgeon said it could come off later that day. No vertigo when I woke up on the day after. Not had a hangover in 30 odd years but this felt a little like that. Still groggy. Not much energy.

The big bandage came off and there are some smaller bandages underneath. The grossest thing is that, to protect the wound, I'm not allowed to wash my hair for a week! Incidentally, they shaved a bit of hair off behind the ear in order to carry out the surgery.

Silence. That's how I can best describe my world at this time. With no option any more to use the hearing aid and my left ear all but dead I have no sound at all except very loud sounds close to my left ear but this is rare. Voices even my own are well below the hearing threshold for me. I reckon something has to be about 90 or 100dB for me to hear it! It has it's uses. Next door had lots of drilling going on apparently.....I wouldn't know! And this is how it's going to be for a few weeks until switch on. But I wouldn't know when switch on will be until the follow up appointment in a week.

Follow up appointment
So a week goes by uneventfully with strength gradually returning. We go to kings cross for the follow up where the doctor takes off the dressing of the wound. Good news. All has gone to plan. No infection etc. the stitches are dissolvable too. He hands me the letter when I ask when switch on will be. There are five dates going well on into January but the first one where they switch me on is......da da da da da da da daaaaaaaaaaa..........Thursday 11th December. Now that is exciting. Only 4 weeks after surgery. There is a second switch on date: Thursday 18th December. So I have a date when the next chapter begins and this bit in the middle between two chapters ends.

While we are there, after the appointment, he sends me for an X-ray.
And I see possibly the coolest photo I've ever seen!
That big disc thing is the implant under the skin behind the ear somewhere. That long wire thing threads through to the cochlear. The end of the wire thing has small dots on it. Those are electrodes. In a normal working ear there are tiny hairs of different lengths that allow you to hear sound at different pitches... High and low. Because my cochlear is damaged...hence the operation, the electrodes kind of take the place of those tiny hairs. Some for high sounds, some middle, some low.

Now my best subjects at school were PE music and maths, not really science so someone else would explain this better but in simple terms, the receiver that will attach on the outside of the ear, will be connected to the internal disc thing in the X-ray. The sound will travel through these two parts along the wire through the cochlear then it becomes an electrical pulse that travels along the auditory nerve to the brain. The brain will then have to make sense of the sounds. Memory plays a bigger part in this. This is why I've been told that despite me having a good chance of being successful with the implant, it is a new way of hearing so it doesn't just happen overnight but will improve over time as the brain gets used to it.

After the excitement of writing the date of switch on on my calendar, it was back to recovery and recuperation. So not really much else to say about it. Christina, the boys, family, friends, work colleagues have all been fantastic in their support and well wishing. Another thing though that has been vital is the support offered by cochlear implant users groups on Facebook and the internet. Great to see so many people offering support from around the world and being able to encourage people who are considering the surgery.

The Lord has a future for me and my family as we journey on this together. Those astute among you will notice that although this is talking about the last  4 weeks it is dated as 11th December. That means that today is switch on!

So we are up to date. Today brings excitement and the next most dramatic stage in the hearing journey of Mr Richard Saunders and family. It's a new chapter. I can't help being excited but also know that I have to keep my expectations realistic! Rome wasn't burnt in a day......but it burned in the end. (Not sure that's a great analogy!).

To the future!

Surgery Day Part Two

So when I last wrote you left me asleep under the influence of non recreational purely medicinal drugs! This part is to say what happened after I woke up.

The first thing I remember is fighting with this thing over my mouth that left an unpleasant taste. It was the mask they put on. It of course didn't seem like a couple of hours that I had been asleep. I believe it had been 9.00 when I went into surgery and it was about 11.00 when I woke up.

I remember one of the staff saying, "hi. All done." Although of course that was lip reading as I was now living in a world of complete silence. They wheel me out into the lift still on the bed. When I get back to the ward I catch a brief glimpse of my wife Christina who smiles and says hi. I lift my hand to say hi. They move me onto my ward bed. I'm still massively groggy and drift off to sleep again.

This on and off sleeping continues for a while. Christina stays by my bed. I am aware of the nurses taking my blood pressure every now and then. About 20 times throughout the afternoon.

Eventually I have the strength to sit up but am then aware of two things:
1) I am still really groggy and tired.
2) The room won't keep still.
It's the second one that concerns me most. I try staring straight ahead but the vertigo is really unpleasant. I'm asked if I want anything to eat. I refuse as I can't even see straight. I accept some water and have a short signed conversation with Christina. By the way signing has been our main form of conversation for over a year now. Must write a post about that part of the journey too. In the end I tell her that I need to lie down again so I do.

After a while of dozing off again I am aware of the surgeon coming round to see me. He asks how I'm doing then reaches over to adjust my head bandage. He can see I'm having vertigo but isn't phased by it as it's a common after effect of surgery. He says I might have it for two or three more days but that I can go home today as arranged. It is after this that I say I'll try some food. Lasagne...or at least a dry square form of it is brought on a tray with a vacuum packed apple crumble. It looks a little like a low budget version of aeroplane food! I have been told by my wife that they won't let me leave until I've eaten something. And it's about 5.00 now.

I cut off one bit and bring it to my mouth. Vertigo still there. But I back out. Queazy feeling. Don't want to chuck up here so I get up to go out to the toilet. Christina follows and so does the nurse who is trying to do up my gown thing as I go! I make it there in time to experience that horrible nauseous feeling. You don't want to know what happens next. Chuck. Chuck. Honk. Ewww!

Feeling a bit better I go back to the bed. And lie down. The nurses aren't happy about letting me go but I don't want food so we compromise on a cup of tea. I get up to drink it. But the vertigo won't go away. But I'm not staying here. Anyone will tell you that when you get vertigo you get hot and nauseous. And what you need after that is water...ok I've got that, and fresh air....there is no air in this stifling ward. No wonder I still feel like this. No way am I staying the night here.

I force myself to get up. But the nurses are starting to tell my wife that I need to stay the night. Christina tells me this and I look at her desperately. " don't leave me here!". She goes back and expresses my wishes. They resist saying I haven't eaten, I've vomited and still feel dizzy. I can see that she is having a battle on my behalf as I'm too weak to fight. I start to get changed then feel nauseous again. This time I've got one of those cardboard hat shaped sick containers to throw in next to my bed. Yes I make use of it! This adds to their evidence that I need to stay.

It comes to a head when a male nurse shouts at Christina: "if you walk out of here with your husband and he dies it will be your fault. Why is he being sick and dizzy?" This is in front of the whole ward.

Christina is an amazing woman and keeps calm but explains that it is my wish to leave, the surgeon and anaesthetist both said I could go and that dizziness is an expected after effect which can bring on the vomiting. He continues to remonstrate until I raise my hand and say " I am discharging myself then!". He grumpily walks off saying he's getting the ward doctor.

On our way out the doctor tries to get me to stay but I've made my mind up. One of the mist ridiculous things I'm asked is "can you hear me?". Of course I can't hear you. I'm on a ward which is
for people who have had cochlear implant surgery! The nurses know I won't change my mind so they go through the medication I need for the next week. Antibiotics and painkillers then get me to sign a
discharge note. With Christina supporting me heavily and still somewhat groggy we make it out, down the lift and out into the fresh air. Oh bliss...air.....not laced with sedatives!

In the car going home I doze off again and by the time we make it home I'm loads better. Next morning after a long sleep I'm fragile but all vertigo has gone.......

Now I'm at that in between stage. One chapter of my life finished. The next to begin in a few weeks. These next few weeks are the bit in between. Hey I might even get a chance to write a blog........

Richard's Journey Back to The Hearing World: Never done one of these bloggy things.But wanted ...

Richard's Journey Back to The Hearing World: Never done one of these bloggy things.
But wanted ...: Never done one of these bloggy things. But wanted to record the before and after of a big event in my life......the decision to have a coch...

Surgery Day! Ahhhhh! Part one

Well. 13th November finally arrived. I had been very stressed in the week and last few days leading up to the surgery. Goodbyes and good lucks had been said. I felt like Frodo going to Mordor with the ring with the wrath of Sauron waiting off him there! That's not to say that I'm likening NHS hospitals to the Dark Tower run by the dark lord but I guess it expresses the trepidation.

I had been told no food after midnight....much like the Gremlins in the 80s film.....then bed. I don't think I got a huge amount of sleep that night. Wasn't looking forward to the surgery and after effects. Being in silence for 5 weeks for one! I had to keep telling myself, and my wife kept saying too that this was worth it, it is the only option apart from carrying on as I was which was not really an option.

We drive to the hospital at kings cross and miraculously find a car park space round the corner. Because I had been told to come in at 7.30, this meant that I would be discharged the same day. So thankful for that as I've never stayed overnight in hospital and I don't want this to be the first!

We arrived early so put in a waiting room. Other candidates arrive. No one says much. No one really smiles. Bit of a relief when we are all called and follow the staff to C Ward. Never did find out what C stood for. Catastrophe. Calamitous. Cataclysmic. Or just the letter after B....

On arrival we are assigned to beds and the first thing I notice about the ward is the heat. Very warm.
Very trendy (not) gown given to me to change into and then I think it'll be ages before the surgery but no....I'm given some forms to sign..... Side effects of the operation are.....vertigo, sickness, possible bruising of the facial nerve.....as if I'm not stressed out enough already. The wife steadies my nerve....it is worth it! Now sign your life away on the dotted line....haha! Now you belong to us...... Ok so that's a bit melodramatic but this is a life changing procedure!

The surgeon comes to see me. Confirms my choice of advanced bionics and tells me he will be performing the procedure. He seems nice and jolly and confident so I think I'm in good hands! Blood pressure and temperature are taken by the nurse. Then it seems only a few minutes before someone arrives to take me away!

I look at my wife who squeezes my hand reassuringly. I hand over and ceremoniously wave to my hearing aid. I'll never be wearing it again. This is irreversible....SO IT HAD BETTER WORK!!!!!
I'm plunged into complete silence. All lip reading from now on. Hug the wife goodbye. She promises to be there when I wake. Just beginning to walk out with the assistant surgeon when the nurse stops me and asks me to complete a form saying what I want for lunch and dinner! Like I can concentrate on that right now! About to go for life changing surgery and you're asking me what I want for lunch! Has the world gone completely crazy? That done I make my way into the lift.....

We stop on a floor and step out. The anaesthetist is waiting with his concoction of drugs so I lie on the bed and wait for the injection. There's no counting to ten or anything stereotypical like that. He just says he's gonna give me lots of drugs to give me a great sleep! The needle goes in and I'm a gonna!

And that's where I'll leave this one. Part two next!

Quick recap...again...part 3 - CI assessment

So we come to the last part of the quick recap that has turned into a bit of a dissertation! It was supposed to be quick Richard!!

At the initial meeting at the Royal Throat Nose and Ear Hospital in Kings Cross London, I see the professor in charge if cochlear implants. He takes one look at my hearing tests and sees my difficulty understanding him and states that, "it's amazing that you are still working." Wow! Really? Well I suppose I do like to think I can be an inspiration to others who might find themselves in my situation. I must say at this point that the glory goes to The Lord who has carried me through all these years and has continually given me the strength to carry on.

He also states that his gut feeling is that I would definitely be a strong candidate for a cochlear implant.

"30 years ago we could not have done much for you but now, through technology we can help you."

Those were encouraging words and they remind me of that 70s series The Six Million Dollar Man.
"We have the technology. We can rebuild him."
The analogy is somewhat spoiled by the fact that he has a bionic eye, not ear but you know what I mean! My Aussie mate in Perth States that we should now start calling me Steve Austin! Cheers Dazza! But I'm way better looking than him! Dazza also informs me that it was an Aussie who invented cochlear implants. Way to go!

Back to the professor. He states that they have to invite me back for assessment to see if I fit into the category of those who can be offered a CI but feels that I will fit into that group. So that's April 2014.

I'm invited back in May 2014 where I have to perform a number of tests. Now I don't like failing tests but I also know that it is only in failing these tests that I will be offered the CI. Isn't that a bit like throwing a football match by letting the other team win? No! I decide that I will do my best (really! Truly!) and leave the rest to The Lord. He knows my needs.

I'm told to keep the hearing aid in and listen to some sentences being read out from a speaker. No visual clues. Purely audio. This is what I heard...."fffwaa fffwa FFA fa. Fffwa" so I reply:
" no sorry didn't get any of that". This happens a few times. There is one though that sounds like this:
"Ff wa shwaa fa shwa car."
"Oh" I say" one of those words was car!"
Result of the test........da da da da da da daaaaaaa......an astounding 5%! That I think is my lowest test result ever! Beating the 12% I got in a maths test once. But that's another story!

The other tests were watching a person read sentences with no sound on a screen. I was slightly put off by the guy's very eighties fashion and hairstyle which got me wondering whether they needed to update the video! I scored 17% on that one which showed I had some lip reading skills even when there was no context and the sentences were completely random. When the sound was added in the third test I scored a colossal 41% which would have scraped a borderline C in a GCSE exam!

So we finished the tests and had a meeting with the professor once again who concluded that even though technically it had to go to a panel, they were basically saying you will get a CI. When asked how I felt about that I think I expressed some apprehension. To which the wise words were issued: "you are only 45 years old. You can't carry on like this."
And I had to admit that he was right. I asked how long it would be till surgery to which I was told it would be around 6 months meaning December or January.

On getting back from a holiday in canada in the summer I opened a letter from the hospital saying that surgery would be November 13th. Wow. Now that's keen and efficient!

Ahhhh! What have I done?

Quick Recap Part Two

I realise that I was going to go straight to writing about the surgery but in my last blog entry I felt the need to explain how I got to surgery and the many years leading up to it.

So there I am living life with one ear that can hear and an effectively dead left one. But then 2007 at the age of 39 I get that familiar feeling of tinnitus in the right ear. Alarm bells... What if I end up deaf completely ? What if this one goes the same way as the other?

I make an appointment with audiology by which time the hearing is better again. Maybe it was just the effects of a cold virus they say. Breathe a sigh of relief for now. But I discover over the next year or so that this fluctuating hearing gives good days and bad days. Sometimes it will be fine for a few months then dip.

This fluctuation continues but I soon realise that the good periods are shorter and the bad ones longer. The other thing I notice is that even when the hearing is better it doesn't reach the levels of before. At audiology they continue doing hearing tests that show a downward trend.

I notice in every day life that I can't often use the phone as it is unclear what the other person is saying. I also notice that my singing which I used to enjoy is now going out of tune or off key....no it hasn't always been like that......ask anyone....no actually don't! When I play the chords on the guitar I can't make them out properly so I'm singing and playing in two different keys!

Audiology give me a hearing aid which is useful at times but still doesn't make things clear.

2011 and 2012 sees a return of the vertigo attacks. Whilst running around a track in training, I experience a sudden turning feeling and end up falling to my left turning an ungainly somersault/ roll bruising my shoulder. Walking to the tube station in September 2012 to go to the Paralympics with my family, I suddenly get that feeling again. I feel pulled backwards by the sudden vertigo and hit my head on the road.

I guess all I can say is that the attacks don't last long. A few minutes recovering in a cold sweat and some water and I'm up and off again. Sounds mild compared to some of the stories people tell me about days in bed in a darkened room or having to give up work.

Eventually in 2013 as my hearing continues to deteriorate, I recognise the need for a more powerful hearing aid. There is a noticeable difference now. Teaching is harder, I can't hear the most simple things the children are saying. If I think about it, the last 18 months before my surgery represented the fastest deterioration.

For that time I had to make some adjustments. Instead of question and answer verbal sessions with the class, I would get children to write things on boards,etc. My school purchased a phonak roger pen mic to make listening easier, if easier is the right word here. It certainly helped. Not perfect solution but combined with the lip reading that I just had to acquire, it assisted me in meetings.

But while these adjustments were going on, at an audiology appointment in Sept 2013, the consultant suggested again more strongly that I should go for a cochlear implant.....hurrah...there you go, I have remembered what this blog is about! So the ball is set rolling.....

Work is challenging but I have now accepted that my hearing won't get better without surgery. I guess if I had known back in 2007 that I would end up profoundly deaf in the left and pretty much the same in the right, I may not have been able to cope with that thought. But like I said, it is kind of a relief really. My wife quite rightly says to me to stop saying to people that I have a hearing difficulty. I can just simply state "I am deaf." And there is a certain release in saying that. It's not defeatist. It's not accepting that life is rubbish. No. These are my circumstances. I make adjustments but the world around me needs to be aware too and make its adjustments.

I now realise that I'm gonna have to blog about the cochlear implant process in the next blog entry. We will get there I promise!!