Cochlear Implant Journey

I had a telephone call on Monday 1^st August 2005 after coming back from a week’s holiday in the UK, saying that there was an opportunity for an operation on Friday 5^th August. I digested the news over with my fiancé, Nigel, and we agreed to go ahead with it. During that week I was so nervous and had butterflies every day. When the time came to be admitted into hospital on Thursday 4^th August, I was churning! We saw my surgeon, prior to being admitted for any queries and we didn’t have any cos I knew what to expect. So got admitted into hospital and had blood tests done. Answered lots of questions!! I then slept for the night having only had a sandwich. I was still hungry as normally have a cooked meal in the evenings! I just kept drinking lots of water cos of being nervous. Morning came and it was so slow! I couldn’t believe that within a few hours I was going to be under the knife!

Nigel arrived late morning to be there to help with anything that I couldn’t understand. He was fantastic and so supportive. I felt more at ease with him there. Then 1.30pm came and my surgeon arrived promptly. However the anaesthetist was late turning up and was stuck in traffic. However a few minutes later he arrived. I managed to ask for an anti sickness drug to help me. I was relieved that they could. Then it was time for the op!

I walked down with Nigel and a nurse to the operating room where I was asked the same questions as I had answered on Thursday. I walked down to Theatre and told to lie down and breathe through a mask whilst a needle was put in my left hand. I was breathing and felt light headed and tried to stay awake. I still had my HA in when I went to sleep. The next thing I knew was that I woke up in the recovery room. I remember three nurses there and immediately threw up! I was given the anti sickness drug and it worked. I was so relieved. After a while they took me back up to my room in the ward. It was great having my own room and not sharing with others cos it meant that less infection get to it.

Nigel was there waiting for me and all went well with the operation. I was thrilled. I was too tired to show it though. He was brilliant sitting there with me but I just kept nodding off and was very sleepy. He then left to go home around 8pm cos it is a long drive back home.

I ate something after he left and had crispy bacon flavour weetos crisps, cheese crackers and a little chocolate cake. Also there was apple juice and a toffee yoghurt. The yoghurt I left and some of the cheese crackers cos it was the horrible cheese flavour and not real cheese! It helped me feel better. I then wanted to go to sleep.

I slept not too badly although lots of waking up for the loo in the night.

The next morning I felt OK except tired. I didn’t have any dizziness. The pain wasn’t too bad because it was kept at bay with paracematol. I had IV antiobiotics and anti sickness tablets. Regular blood pressure and pulse checks. All was going well. I took it easy and dressed after breakfast and had a morning nap before Nigel and Oliver came. I was then told to have an x-ray. It took about 20 minutes or so I think.

Then went back up to the ward and had lunch. After lunch Nigel and Oliver came. It was lovely seeing them both. We went to the hospital restaurant and had a nice Eccles cake and a cappuccino. I fed Oliver his tea and then he was very tired and needed to go home. It was brilliant seeing them both. Then it was tea time for me. I then settled down for the night – to try and get a good night sleep.

I had a doctor come round Sunday morning after my morning nap and had really good news that I could go home. He took my turban off and said it was looking OK.

I was chuffed to bits and text Nigel the good news.

Two weeks on, I took it easy…. and today on 18^th August I had my dressing removed and the steri-strips removed and all looked fine. It was good to have it out as it was really annoying me! I am now going to have the switch on in two weeks time on Friday 2^nd September!

I’m so glad that all has gone well so far with the op and my recovery too. Now for the next step of my CI journey.

So watch this space…..for my switch on day!!!

The switch on day has been added at a later date due to being busy!! It was written in September 2007 as written from memory.

My switch on day

I was very nervous and Nigel, my fiance, was with me. I had a series of beeps tested and then finally the sound. I was giggling! It all sounded robotic! Everyone high pitch voices. So strange. It was a moving day as it was voices and not all distorted like my hearing aid was. Next day it was a bit clearer then as days, weeks went by, it became a lot better. It was better in the way of low and high voices sounds that I was able to distinguish whether it was a male or female voice. Eventually I started to place the voice with text when I was learning to hear. And that got better and better.

Sounds I heard:

• rain drops on the roof of the car as I was driving along.

• Different types of birds songs

• Leaves

• Starling birds

• Aeroplanes

• Helicopters

• Cars rushing by and even could distinguish whether it was a petrol or diesel noise

There were so many different sounds that my brain eventually filtered them out but it was a long while before I was happy with different sounds.

I did get very tired at the beginning with all this listening but gradually that got better too.

Implant failure

Sadly in June 2006, I started to experience intermittency – cutting on and off. I don't know why but evenutally it stopped completely when I went to my implant centre in Southampton on 20^th June 2006. A representative from AB came and did a series of different tests to establish the cause of the failure and couldn't find anything as it was working OK when I went to the centre but did a few types of test and had a coffee break. It was worrying at the time. After the coffee break, it stopped completely and failed. It was a very sad and upsetting day. Unfortunately my fiance was in USA at the time and couldn't comfort me so I had to console myself. This was a journey I never want to experience again on my own as it was quite heartbreaking.

Unfortunately I couldn't have a re-implant surgery straight away due to the fact that I was pregnant. That why it was also heartbreaking because it would be at least a year before I could have the re-implant op. I waited that long due to wanting to spend time with my little one.

In June 2007, I was asked if I would like to go bilateral. I was amazed. I seriously thought it over with my hubby. (We got married in December 2006). I, took, the brave chance and said Yes. It wasn't an easy decision because prior to that when I gave birth to Elliot (October 2006), I had to have caesarian and unfortunately it led to an emergency hysterectomy at the time as the placenta was clinging onto my womb and wouldn't stop bleeding. I was shocked at the time and it led to all sorts of strange emotions, such as being half woman and couldn't have any more children, etc. Anyway, I, eventually got over it and it wasn't until May 2007 that I eventually pulled myself together to try and be strong. A very hard time.

Of course, I couldn't have the bilateral operation just like that as had to get funding first from the Primary Care Trust. Briefly, the PCT deals with funding for various types of life requirements. Anyway, a special group called Exceptional Circumstances Committee dealt with cases like mine. My case was exceptional in that I had implant failure and to have the 2^nd implant would avoid in the situation of being in a silent world again. (I've already experienced that twice – first was when I lost my hearing in 2004 and then the implant failure in 2006). Unfortunately they only meet once a month! Of course it wasn't that straight forward as the PCT couldn't understand why I was exceptional etc. Eventually, the PCT changed their mind and said yes. The news came in late August whilst I was on holiday in Devon. I was so thrilled!

The op was on 14^th September 2007 and didn't think I was going to survive it, because I was so nervous that it was going to be 5 hours and thinking about the risks, what would happen to my family, etc. Oh the thoughts I had was really making me nervous. The day of the op came and it was over and done with. Allthough I was shattered and still am! The reason being is trying to sleep! Today, 24^th September 2007, I'm off to see the surgeon. See Part III for more update!

September 2007