A special way of being able to hear again. It's a miracle to hear with two cochlear implants.
Monday, 24 September 2007
My 10 days post op checkup
Whilst he took the dressings out of my ear canal, the right ear that he did, cor, didn't half hurt when he pulled it out - it felt like a cork stopper pulling out of a wine bottle. I even said "bloody hell" and jerked and banged the surgeon's knee! Also the steristrips were definitely stuck to my head as he pulled them off and that was a bit sore too.
However, the consultant still hasn't received the x-ray results and is waiting for the ex-planted ear implant report. So I hope to hear from him at some point, perhaps by letter or to see him. However it is always only ever a 5 minute chat with him and it's over. He's always straight to the point and never messes about. However he gave me an interesting insight in that the dressings in my ears and steristrips and the bandage all helps to make the wounds heal faster, that is why the dressings are left in my ear. I have to say he is right because the scars are very clean!
So glad that the dressings and strips all taken off as I feel a human being again!
All that remains now is a date for the switch on, x-ray results and ex-planted ear implant report. I'm really curious to know what they find in the report and to hope that the x-rays are all ok. Perhaps I'll chase up on that next week and see if there is any news about it.
Post op appointment - seeing my surgeon today
I'm hoping that my scars are healing well however have to wait and see my Consultant today.
Oh and managed to lie down on my sides last night to sleep although it wasn't very easy at first but eventually went to sleep as am fed up sleeping upright! It's hard work sleeping upright. My right side was more comfortable than my left side. I'll find the knack of getting my pillows right in the shape of comfort for my implanted ears.
Thursday, 20 September 2007
My operation experiences on 14th September 2007
Anyway, I was delirious when I came out of the op. I remember bits of the recovery room and this lady. I was in and out of my sleep like a yo yo! You wouldn't believe it but later that evening around 9pm I managed to go to the loo by myself! I was proud of myself! Although did go to the loo earlier around 5pm-6pm when Nigel was there with me and I wanted to go then because I felt safe with him there but of course I've had an injected needle still in my left foot! I still don't know why to this day that I had that needle in my left foot but I'll find out more when I see Mr Pringle at the Post op appointment on Monday to check my ears out and they are ok surgically. Well, they took the needle out so that I could go to the loo but it bled as I was walking and had to sit down again to stop the bleed! It did stop and went back to bed. I even managed to have supper that night, it was a beef stew with carrots and mash. It was hard work eating that cos I was sweating with this woolly hat on my head. It was not a brilliant night sleep because they kept waking me up for blood pressure checks in the night and drugs. It was a long night! Next day I got up and made sure I had a walk now and again
to stop the DVT etc I ate fine in hospital although kept snacking on my dried apricots, raisins and prunes to keep my bowels in working order cos of all the drugs I had etc I did drink loads and loads and loads of water cos it is hot in hospital and it makes you really thirsty. Strange thing is on when I came home on Monday, it stopped this thirstiness, weird! On Saturday evening Nigel brought the boys to see me and their face expression when they saw me with my woolly hat! Bless them it did frighten them, especially Oliver who was agogged! It was great to see them as I really missed them so much, it gave me an inspiration to get better faster ready for Monday to come home. It was such a long weekend in hospital. Anyway, there was an incident on the ward that I was in. A patient came towards my next door's patient's bed holding on to the drug trolley stand and this next door's patient who was a Chinese lady was getting very concerned and I buzzed for a nurse to help calm the situation. This patient holding on to the drug trolley was an older lady, I reckon in her seventies going do dally. It was frightening. She wouldn't calm down. The Chinese lady expressed her concern to a few nurses and it was decided that us three; the Chinese lady, me and another older lady who had surgery on her face to move to another ward. Luckily there was another ward that was empty and so we went there and settled down for the night. It was much more peaceful and I was able to get a bit more sleep. Luckily I had my eye blind to cover my eyes to get some kip. The eye blind is what you use on aeroplanes so I was very pleased to have that, very useful. After that incident, the Chinese lady was relieved but she didn't half fuss about everything, her bed, the window, the medication etc. She moaned about it to me a lot. I just took it on the chin and not took it personally. On Sunday morning the doctors came round and said that I could have the bandage off. Golly I was so chuffed to bits to have it taken off - it was a lovely breeze and the weight so much lighter. I slept much better that night. Come Monday morning, I couldn't wait to leave. Although was stunned that I had to walk to the X-ray department by myself! I know I was better but to go on my own in a strange hospital! I was a bit nervous however I did get there ok and it took ages to have this x-ray. I won't know of the results of that until we see Mr Pringle on Monday. However, I do know that from what Nigel told me about the electrode tests of each implant works fine. In fact it is really good in my left, better than what it was before originally. Apparently, that is quite often the case with re-implants!! However, my right implant is OK too, just not as good as my left. I was really pleased because it sounds as if the op went well although I have got some strange bruising
on my left eye, my left wrist and my left foot! Bizarre! It leaves me curious to know how the op went - I guess I'll know more from Mr Pringle on Monday. The only thing I've got left in my ears now is the dressings in my ear canals. They don't half itch inside them and it makes you want to wriggle your finger in there and give it a scratch and you can't! Don't worry I can grin and bear it until Monday cos I know Mr Pringle will take them out and it will feel so much better. I do have some steri-strips behind my ears so I guess they'll eventually come off when I have a hair wash which I can do in a week or so time.
I can't believe it is a week today that I went to Southampton. How time flies!
It is great to be back home. However, I was a bit disorientated on Monday and it is taking me a few days to get my bearings. I think it is because the whole op has given me a new perspective on things. Especially with two ears. I just don't know what I'm going to be feeling when I get switched on. I know I'm going to cry because I never heard out of my two ears. It is like a dream come true. I've always wondered all my life and yes there were times in my left that I wished that I was a normal hearing person. I'm trying to prepare myself now for the next step towards being switched on. It's been so long since I've heard and I have such a mixed bag of emotions; so hard to describe it. I'll definitely write up about it when the big day comes.
Wednesday, 19 September 2007
My cochlear implant diary
little pain, although I do have strong painkillers, taking antibiotics
and also take paracetamols to help me get through the pain barrier.
I decided to add photos of my cochlear implants onto my blog so that I
can keep track of what is happening to me with my cochlear implant
journey.
My surgery photos!
Two days later I had the bandage taken off and.....
This is my left cochlear implant
This is my right cochlear implant
This is me with the bandage off!
My Deaf Journey
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!
Tuesday, 11 September 2007
3 days to go....
I just hope it really clears up by Thursday afternoon when I'm at Southampton. I shall be seeing my surgeon, Mr Pringle, first, then it will be to the hospital to check in for the night as the operation will be early on Friday morning from 8.30am onwards! I'll be woken up early and certainly won't have had a good night sleep either especially in a bed on a ward. Not looking forward to that.
It seems to be standard practice going in to hospital on a Thursday and be out on Monday. I was lucky last time in coming out on Sunday instead but doubt it'll happen like that this time as having the simultaneous bilateral.
Fingers crossed that my cough goes completely by Thursday. Run run cough go away and don't come back!
Saturday, 8 September 2007
7 days to go...
I've been making other preparations too, such as weaning my youngest off from breastfeeding. I've been breastfeeding him early morning and before bedtime each day. Whereas today, this morning I've stopped that and gave him his bottle of milk instead. He had been using doidy cups for a long time now but this week by surprise he managed to suck the bottle's teat instead. I was amazed but relieved as it will be easier for my hubby to look after him whilst I'm in hospital and recovering. It was very sad but I knew it had to stop at some point and it seems a good time to stop. After all he's been doing it for nearly 11 months. I shall stop the evening feeds too this coming week before the op and then that will be it forever. It seem hardest to let go as he's my last child as can't have anymore either. It's certainly been a rollercoaster since June 2006. I'm hoping for a really good CI journey and that I don't have any further set backs for a long long time.
My cold is much better this week in that I've not coughed as much, just in the evenings and in the nights. Last night was the best night as it was the least amount of coughing so managed to get some more sleep, hooray!
However, I was worried on Thursday about my coughing as had to go to the dentist for a new filling. I thought it would be a quick filling job but it took an hour! My jaw was stuck open for an hour! It didn't half ache at the end and having to lie still for so long too and keeping my head still! Nightmare! However, this new dentist is definitely better than the last one I had cos I had a crap filling done whereas this new dentist sorted it all out and looked like new! I was so impressed! I couldn't believe how good my tooth looked! Amazing! Throughout the dental treatment I didn't cough one bit - and it showed I am getting better!
Hope my coughing gets much lesser today and that I'll be fit and ready for the op - let alone my nerves! It is going like the clappers thinking about it!
I had better go and keep busy so that it takes my mind of it.
Wednesday, 5 September 2007
Good news!
However, cos of all the stress with the boys and been waiting ages for approval I've got a most annoying cough however though it seems to be getting better as I'm not coughing as much as I used to. So I'm going to wait until next week if I need to see my local doctor to be sure that I'm ok for the op.
Well, if I'm OK by 14th September then the op will go ahead - watch this space!
On another note, my eldest son started his first day at a senior school today and it is quite strange to see him go to a big school rather than his primary school after all these years. New uniform, everything so different! I do hope he's getting on ok today. I'll find out later.
My youngest who is 10 months old is now crawling really well as he started about a week a go to crawl - it happened whilst we were staying at my sister's. He's coming on in leaps and bounds! Oliver is talking very clever these days and is becoming quite a bossy little chap!
Finally my hubby is so fantastic in helping me out and I can't wait to put my feet up after the op and he does all the work, he he hee :-)