Wednesday, 19 September 2007

My Deaf Journey

My name is Elaine. I was born deaf due to maternal rubella. My father found out that I was deaf when I was 3 months old. It was thought that I was deaf in both ears but it later turned out that I only had a bit of hearing in my left which left me severely deaf and none at all in my right ear. This is at a severe level. I did have speech therapy when I was very young and went to mainstream schools from Infant to Secondary and they each had a Partially Hearing Unit (PHU). This was quite common back in the 70’s and 80’s but however I don’t think it is now. Luckily my parents were very supportive as well as my adopted brother and sister. They all taught me to be confident, independent and sensible. As I was growing up I was given a body worn aid called Danavox. My mum had made a special pouch for me to wear on my chest. I remember it well as it was a white leather pouch. I was a shy girl and still am! Wearing this type of aid I did feel rather low in confidence, this was purely because of the fact that my aid showed that I was deaf. In the seventies people didn’t care for much for me being deaf – this is because being deaf was not recognised in mainstream schools. This I continued to have until I was a teenager when the Behind The Ear (BTE) aid was introduced. I was feeling more confident with myself as I got older as being a teenager you tend to feel rather care how you looked. The BTE aid was a Phonax analogue aid. It did serve me very well over the years. As it was neatly hidden with my dark hair and I had a really good voice along with it. This helped my confidence a lot and I was mistaken loads of time as a hearing person because of the way I spoke. I couldn’t understand why people thought it was amazing then over the years I realise why. It did have its pros and cons because it meant that people expected me to hear and understand everything that was said and the good thing was that it did help me with the jobs I took up but because my voice was so good that they assume I was hearing! When I first started applying for jobs, I was worried how the employers would take on deaf people because I thought I would be restricted. It turns out that it has nothing to do with how deaf you are now but simply what you are capable of. I was impressed with my employers in the different jobs I took up. I started as a secretary when I joined up the Youth Training Scheme. I had to wear headphones when learning how to type. I tried to do shorthand but found that it was an impossible mission! This is because I normally lipread and had to write at the same time and that is too hard to do.

I decided on a different path in my career, in that instead of being a secretary that I would have a dab at being a programmer. My golly this was so different – I was given a handbook and a computer – just learn yourself! Crikey! Anyway it was good but did take rather a long time. I began going to college and learn Computer Studies. This was difficult because I didn’t have a radio aid then and had to rely on being in front of the room so that I could hear the tutor properly. This helped and I got good grades. However, a huge bombshell happened in that my parents had been killed on holiday – it really crashed my confidence etc. I was not the same person any more. I changed jobs and tried to do systems analyst programmer – this was more interesting job and then had a baby. That was hard, in trying to hear whilst giving birth!

Over the years I didn’t think anything of my hearing because it was going fine. Until another huge bombshell – it just dropped even further. I went for hearing tests and was dumbstruck as to how much I had lost. It was nearly at the bottom – the same for my right ear where it could hear nothing! I was really scared! It wasn’t until I saw an ENT consultant who broke the news to me that the only thing left was to have a cochlear implant. I thought “what?! No!!!” I was so disappointed. I couldn’t understand why and prayed that my hearing would get better. It didn’t and still to this day it hasn’t. My tinnitus was awful – so loud and horrible. I hated it because it meant that I no longer have silence – just bloody noisy silence. I became really depressed because it had a huge impact on my job, my relationship and my son. Then the everyday life where you are out in public, on the phone etc. All the things we take for granted. I had to pluck courage and try to think what I can do to make myself strong and to get through each day.

I started to research on tinnitus and cochlear implant. I dreaded looking it all up but got used to it. I have to say I did grieve for what I had lost – it was a lot that I had lost. I’m getting used to it now although do wonder each day if my hearing would get better. As for my tinnitus – it has got better because I learnt to ignore it. I concentrated on things around me, e.g. hobbies such as embroidery, reading, TV. I did mourn for music because I love music. I did used to play the piano and got to Grade 4 in my early 20’s. I just wanted it back…. this I find hard to cope with.

It wasn’t until this sad day – 11 February 2004 of what I had lost with my hearing. Over the weeks I realise how much I took for granted of the sounds around me, such as cooking, phone, TV, music, radio and so on.

I first went to Southampton Implant centre in March 2004. It was weird being there. It felt like I was going for another hearing test. It did and it had got worse my hearing since having the test in February 2004. Anyway, I had to do the following tests: Video of lip reading with/without hearing aid and headphones. I was tired because it was trying to listen to the sounds with the annoying tinnitus lurking in the background. I couldn’t make out whether it was the tinnitus or whether it was an actual sound. I just clicked what I thought it would be sound. I wasn’t happy and felt like slapping my ear and telling it off!

I had some more tests in June 2004 to confirm whether it had detoriated and it had. I thought when is my hearing level going to stop dipping. I prayed that it wouldn’t go down any further. I was shown the types of cochlear implants etc. but I wasn’t taking it all in very well – it was just there in front of me and hadn’t sunk in.

Then shortly after this visit I found out that I was pregnant! I thought oh no that means I can’t continue to have the assessments and the CT scan that they booked. True to my thoughts I couldn’t! So this had to all be put on hold.

June was a very hectic month cos we had moved house as well. As if being pregnant wasn’t stressful enough!!! Crikey how was I going to cope with all that had had being going on, losing hearing, being pregnant, moving house and my job then my partner back to USA for a few weeks work as well!!! Arrrgggghhh! I could scream, but didn’t!

I tried to forget about having an implant and concentrated on having a baby. In a way I was glad because my clock is ticking cos I was 34 and would be 35 and a bit after the baby was born. The pregnancy was awful cos of being sick everyday and indigestion all the time! I didn’t enjoy it all that much and tried to but couldn’t. I had another blow in September 2004 when my dog, Shelley was very ill and wasn’t expected to live for very much longer and we tried all sorts of things with the Vets. It was very heartbreaking cos she was my parents’s dog and I loved her to bits. She was everything to me – barked at the door, jump up and down when the phone went, etc – really good she was. It was horrible when she went but she didn’t suffer. Being heavily pregnant at the time didn’t help either cos I had to get a friend to help with giving Shelley the drugs cos of the side effects of them could affect my bump! It was a very very sad time as well.

After Oliver was born I was over the moon and gave myself a few months with him before going ahead with continuing the assessments. When I went back to Southampton in May, they repeated one of the assessment I had back in June 2004. It was the headphones test to listen for sounds and then the lipreading with and without the hearing aid test. The lipreading with that robotic man on the screen – gosh he had no feelings! Apart from this test I did an additional one where you had to have the bone headphone so that they could test the bone conduction rather than air conduction to the ear. As well as this I had the electrode test where you have a wire stuck to your forehead and then two wires – each stuck behind my ears. I rested in the armchair for 15 minutes and I dare move and had my eyes shut to try and relax. That was hard and I thought I was relaxed but they said there was too much movement in the chart – whether it was because the sound booth wasn’t soundproof enough, I don’t know. However, they did say it was common with a lot of people of the test not being 100% working properly. I also had another test where you had to answer several questionnaires on the computer touch screen. You touch the screen and it would give you questions with a random bar. I gave my most honest answers to each questions based on tinnitus, expectations of the CI, Support from family and friends. The last assessment I took was the speech and language. This was more like a counselling session and I just talked and talked for an hour and a half. She was impressed with how much research I had done on CI and how my expectations were impressive. I was happy with the report that was sent to me in the post on it. Also my hearing report hadn’t changed from last year and here is what they’ve discovered with my hearing. The hearing aid is a digital aid called Oticon Sprit.

My hearing loss is a profound bilateral (both ears) sensorineural, caused by the inner ear/auditory nerve not working as they should. My hearing loss is worse on the right ear with no recordable responses except at the low frequencies where I can feel the sound.In the left ear there is some residual hearing up to the middle frequencies but only at very raised levels.

With my hearing aid on I can detect sound at 50-55dB up to 1 KHz frequency but above this even with the hearing aid I respond at 75dB at 2KHz and there was no reponse at higher frequencies than this. This means that in terms of speech I may hear some of the more powerful vowel sounds of speech but it is doubtful that I will hear any consonants even with my hearing aids. Hearing the vowels sound is useful for helping with lip-reading though as was shown by the sentence tests that I did.

The next few weeks was nail biting but just took each day as it came until one day when I was asking my audiologist some questions, she replied that I was accepted in the cochlear implant programme. Now the CI journey begins! I am now awaiting for funding to be accepted, meanwhile I have to have a meningitis jab as this is a standard requirement with all prospective cochlear implantees as well as those who have already been implanted.

Certainly my life has been a rollercoaster – lots of rides along the way and some more on the way, as I hope to get married next year as well!!

Cochlear Implant journey

I had a telephone call on Monday 1st August 2005 after coming back from a week’s holiday in the UK, saying that there was an opportunity for an operation on Friday 5th August. I digested the news over with my fiancĂ©, 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 4th 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 18th 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 2nd 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 20th 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 2nd 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 14th 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, 24th September 2007, I'm off to see the surgeon. See my blog for more update!

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