Tuesday, 9 July 2013
|Royal York Hotel|
|York Train Station|
I've never been to York before and I met up with the rest of the Mentor troop and it was great fun! The train station is right next door to the Royal York Hotel.
Come and chat with me to find out how I got on and I was so excited and amazed that Naidia has loads of things to offer for everyone!
Click here to chat with me.
Tuesday, 5 February 2013
What is Neptune?
|Cool Neptune makes sounds possible to hear on water|
|Choose your own Neptune colours|
Here is more information about Neptune on the Advanced Bionics website - when you go on the website, you'll see on the right hand side a Video Link button that will show you a series of mini-videos. The last mini-video has a video called "Our Breakthrough" and this will be about Neptune. And also on this video link it has a transcript available to download. The transcript file is enormous because it contains various languages and so I've extracted the English version for the "Our Breakthrough" video, here it is below. I can see the Neptune proving to be an invaluable and important device for all to be able to hear in the water. The opportunity to do this is great as it can help us be better swimmers such as having swimming lessons.
Saturday, 8 December 2012
Monday, 29 October 2012
Here's what's coming.....http://cochlearimplantonline.com/site/advanced-bionics-new-cochlear-implant-to-be-released-in-2013/
Also can't wait to meet up with others at the AGM at SOECIC on Saturday 3rd November. http://soeciug.blogspot.co.uk/
Thursday, 5 July 2012
Wednesday, 28 September 2011
If you would like to come along, please let me know, that would be great.
Wednesday, 1 September 2010
Southampton to conduct UK's first cochlear implant operation to give sound in both ears
A cochlear implant is an electronic device that can help both adults and children who have a severe to profound hearing loss. It has two parts: an internal receiver/stimulator package and electrode array, and an external speech processor that looks like a hearing aid. The device uses small electrical currents to directly stimulate the hearing nerve, which then sends signals to the brain where they are interpreted as sound.
Julie Brinton, Joint Head of the Centre, comments: "Over the past 20 years the South of England Cochlear Implant Centre has implanted over 500 people with different implants. Some adults and children have already received two implants, with one in each ear. The difference with the device being used on Friday is that, although information is delivered to each ear, there is only one implant."
Although around 40 of these devices have been implanted in patients in Europe, this is the first of its kind in the UK.
The operation will be carried out at Southampton General Hospital by Mike Pringle, Consultant Otolaryngologist based at Queen Alexandra Hospital in Portsmouth.
Mike Pringle says: "This is different to other types of implant as it is one implant going into both ears. It's not unusual for children to have two implants, one in each ear, but adults usually just have one.
"This type of device has an internal receiver/stimulator with two wires; one will go directly into one inner ear and the other will go over the top of the head, under the scalp, to reach the other inner ear. There will be a microphone on each ear collecting sounds from both sides.
"The advantage is that it allows adults to have bilateral hearing. Having two ears working makes it easier to hear in noisy backgrounds and also helps with localisation, or hearing where sounds are coming from.
"Also, because there is only one processor and one internal receiver stimulator this makes this device significantly cheaper than two separate implants."
The recipient of the implant is a 44-year old woman from the Isle of Wight. She has been deaf all her life and has used hearing aids until now.
Dr Helen Cullington, Clinical Scientist (Audiology) at the University of Southampton, adds: "Following the surgery she will need to wait for four to six weeks before the device is tuned and she can begin to have auditory rehabilitation to encourage her listening with the new sensation she will experience.
"There is an individual programme for each patient; a computer is used to assess the levels and frequencies of sound that the patient can hear and tune the implant accordingly. This is a very exciting opportunity for a deaf adult to obtain hearing in both ears."
Wednesday, 18 August 2010
Monday, 16 August 2010
Thursday, 11 March 2010
I decided to make a step by step guide for those who want to come to the Chat room...making it more user friendly to join it. I've put it up on the top right hand side of my blog....click on the guide.....do hope it helps.
Monday, 8 February 2010
What a fantastic team to represent BEA Mentor team for the UK. It's great that I can give more support to people thinking about a cochlear implant now that I'm an BEA Mentor.
What a great opportunity to be able to help this way and give reassurance that all will be ok because with my cochlear implants I'm able to achieve many things.
So if anybody thinking about a cochlear implant feel free to contact me.
Sunday, 17 January 2010
Where do I start? Well probably posting my results of my CI hearing tests would probably be best! Ok, here are the results.
No Visual Presentation - just the man's voice out of the speakers.
Speech in quiet
Bilateral CI 98%
Right CI 90%
Left CI 100%
Speech in noise
Words in quiet
So there you go - it looks like I'm doing really well - I was impressed to find that it's consistent. My right ear, I'm especially amazed with. I should have put my results from the year before but I can't find it. If I do find it I'll put it on here and then see the difference.
I have to go now because I've got get my family packed lunches ready for tomorrow - a busy week ahead again!
I promise to update a bit better in future!
Monday, 12 January 2009
A few weeks after the funeral, my hubby, suffered a horrible flu that was onset by my youngest son's high temperature. The flu made him loose balance and fall over constantly. He had an ear infection and after weeks of getting it clearered up with different brands of antibiotic the dizzy spells weren't going away. In September we went to see an ENT consultant at a private hospital and was told nothing can be done to cure the dizziness. He has labrythinitis. He still has it despite of no sign of it disappearing. He's learning to manage with it. It's changed his life alot as there are certain things he can't do, such as spinning round and round with the kids as this makes the dizziness worse. We've had such a lot of support and prayers from our local church and they've been fantastic. It worries me alot of his illness and dread him going to work every day in the car so early in the morning as I'm sure it makes the dizziness worse but in fact it is worse when he's home in the evenings from work. He never moans about it but there are physical signs of him going dizzy and I can spot them.
On the bright side my bilateral CIs are doing really well as in November last year I had my annual review and just recently had my review report sent in the post to me. It's a bit technical this bit but here goes...
Soundfield Aided Thresholds I had my left and right ear tested separately. My left ear at the following: 250Hz 20dB, 500Hz 15dB, 1000Hz 15dB, 2000Hz 20dB, 4000Hz 15dB. My right ear at the following: 250Hz 40dB, 500Hz 30dB, 1000Hz 35dB, 2000Hz 25dB, 4000Hz 25dB.
I was impressed that they've both improved, especially my right ear!
Speech Perception Tests. These were presented through a computer test station at 65dB(A). Speech tests can be presented in a sound alone condition or on video, with sound and visual presentation. These tests were carried out with both cochlear implants.
I had visual presentation turned off and BKB Sentences (just voice only through the speakers). The BKB Sentences done with Sound of Speech in quiet I scored at 99%. The BKB Sentences done with Sound of Speech in adaptive noise I scored at 2dB SNR!!! AB Words done with Sound of Words in quiet I scored of Phoenemes at 85% and Words at 75%. It's a tough test with just one word said at a time and nothing to help you what the word is about. Overall I was chuffed to bits with my progress. I had hardly any mapping changes because of the progress I've done would ruin all my efforts in learning to hear. The CIs are stable and happy now and even the impendance telemetry and no changes are found on any of the electrodes which shows they are all stable now and working well.
Then December was a horrible month of high temperatures, flu, followed by tummy bugs and it was on Christmas, thankfully, had no bugs but then we had the colds again very soon after that. It's still lingering but lingering less and less each day! Christmas shopping was a really struggle with getting presents etc for people. However it was a good Christmas although a worry about my mother in law as it is her first Christmas without her husband. However she's got fantastic support from her daugher and her family in that she was able to stay at her daughter's house.
My eldest son has just turned 13 recently so we've got the terrible teenage years ahead of us and the terrible twos too! However, thankfully my middle son just turned 4 which is a nice age as he'll be going to school in September so got some exciting months ahead of him and is learning alot. Whereas meal times are a nightmare for my youngest and eldest in that they won't eat properly and yet my middle child is getting better at meal times. It shouldn't be stressful at the table when we have our family supper each night. Hopefully this will improve.
Wednesday, 12 March 2008
I went to a cochlear implant gathering a couple of weekends ago and it was great fun although over too soon! I travelled for the first time on my own all the way to the other side of the UK - Cambridge! It was a long journey and only stopped once for a loo trip - I was busting! However, I surprised to find that I still had energy for the evening's gorgeous 4-course meal at a lovely old college in Cambridge. Fantastic place, although couldn't see much of it because it was so dark. I really enjoyed my time in Cambridge and it was all over too soon when I had to drive back. I was shattered because this time my driving went into night time driving and had to cope in driving on roads where there was no lights - I wasn't used to that.
On a separate note, I have a friend who is deaf and is doing a race for life running event in Bath and I've got a link shown on the right hand side so that anybody can put in a donation for her. I've started the ball rolling by putting in my first donation. I really hope that it doesn't rain on that day - I think it is 1st June that the event is going to happen.
However, another separate note, sadly my father in law is facing his last few days after battling bowel cancer since about two years ago. It has been a rollercoaster time for him and to see him the way he is at present is so hard to put into words. I couldn't face seeing him when my husband went with my younger son to visit. I had learnt from the death of my parents (they passed away 14 years ago on 1st April - on a Good Friday) and of my grandmother in that same year of August, in that it is best to remember as they were. It reminds me of the poem - a thousand winds - here are the words http://bijolab.com/song/english/poem/wind.html I've always remembered since then - it is a beautiful poem so easy to remember and meaningful too.
Monday, 18 February 2008
Thursday, 10 January 2008
Well I went for my 3 months tuning session on Monday 7th January and wasn't expecting hearing tests but I should have known really because it happened when I had my first implant but this time it was loads and loads of tests because having two ears for testing and not one ear!
Anyway, the tests were:
All sound tests at level of 65dB
Cuny sentences (lipreading and listening to the man) left CI score of 99%
BKB sentences (listening to man only & no lipreading) left CI in quiet score of 95%
BKB sentences ( -----------ditto --------------------) left CI in noise score of 85%
CUNY sentences (lipreading & listening to the man) right CI score of 75%
BKB sentences (-----------ditto---------------------) right CI in quiet score of 19%
BKB sentences (listening to man only & no lipreading) right and left adptive noise of speech v noise SNR of 0.5 dB
BKB ---------------------------ditto-----------------left adoptive noise of speech v noise SNR of 2.5dB
AB words (listening to man say one word at a time & no lipreading) right and left CI in quiet 81%
AB words (----------------------ditto----------------------------) left CI only in quiet 62%
So all in all the two implants are working together and the right ear having had tests of just listening to the man with no lipreading at 19% might not sound much but having never heard out of that ear ever since I was little is showing that I'm practising hard with my right ear. And to lipread with the right ear on its own is brilliant too. I am so chuffed how well I did in these tests after a hectic Christmas and birthdays!!
I am beginning to enjoy being bilateral more now whereas the last three months was hard because of the sounds in my right ear wasn't very much information but am now making out some words as you can see from my results with the right ear. I shall continue to work hard with my right ear.
I also had some other changes to my mapping in that with the t-coil I've asked for it to include the built in mic which is a 50/50 setting. I'm trying this out but at the moment I'm not that happy with it as it is including sounds around me and I can't fully concentrate on what is said coming through the t-coil. I'll give it another go for a while. Am trying to get around the "hissing" sound that I get from the t-coil.
Thursday, 29 November 2007
session to be. I had expected to have both processors tuned and
mapped. Instead it was only my right ear that was mapped. I was
puzzled why they didn't do my left ear.
Interestingly it was because my left ear doing so well that it didn't
need mapping and that my right ear was mapped to try and balance both
ears. So I had each electrode checked for loudness levels and then each
electrode compared with the next electrode to check for loudness level
between the two. This was the same with all the others. All the
electrodes apart from electrode one is all stable, thank goodness! When
I had these electrodes sorted out, the audiologist then got lots of
musical instruments and a had a good go and testing each one near my
ear! Blime me, I felt like a child!
Anyway, I had an aided threshold hearing tests to see how my right ear
was getting on, the last hearing tests three weeks ago was around
40-60dB across the speech range whereas now it is 30-40dB across the
speech range! I was stunned! I didn't think I did that well. Although
I still have a dip in the middle of the speech range but a lot better
than what it was before.
So good news about the right ear's progress. I did some speech therapy
too with just my right ear and the speech therapist was impressed!
Tuesday, 27 November 2007
It's just hectic and always is still.. I feel really dreadful in not being able to keep up to date with my own blog and when I read other people's CI blogs - they are so good at keeping at it.
I have two little boys that keeps me on my toes all the time and by the time I've got them to bed, all I want to do is chill out. As well as my little ones I have a big boy too look after - my eldest son who is nearly 12 does stress me out a lot especially with his moods and unwilling to do these. He's rather lazy and winds the little ones up alot that there are lot of screaming sessions - there are times when I would love silence. Now to say that is strange because I've wanted to hear again after so long but when you have screaming kids - who wants to hear that kind of sound when learning to hear with the cochlear implants.
Anyway, as I say it's been hectic and so I'm going to put down as much as I can remember since the switch on and then try and keep it up to date.
My switch on day. I was very nervous and thought I was going to cry and everything but I didn't for some strange reason. I think it is because I know what to expect at a switch on as I've done it before. My left ear was dealt with first and then my right ear. At first they did some programming to condition the implant and to stimulate it then I had some beeps going on. Then it was ready for the switch on. The sounds I heard was very much like I heard before - high pitch voices and Nigel's voice was deeper. A few twigs here and there adjusted by the audiologist was sounding a lot better. I was put on Hi-Res S Fidelity 120 for my left ear. It did take a while to sort my left ear out. Now my right ear was a different story because it was being switched on for the first time and never heard out of that ear since I was a baby, I think. I can't remember ever hearing out of that ear and heard some beeps but not in the same way as my left ear. When they switched my right on, I just got "thump thump" etc. Each thump was representing each syllable, so if I heard a word like brother, it would be sounding like "thump thump" - two syllable. It was so weird but heard something. I was just really pleased to just get something than nothing. I was impressed! I, too had Hi-Res S Fidelity 120 for my right ear as well. A long time for my right ear to be sorted out too. When I had both on together it sounded better. I don't know why but it sounded alot better. Strange! I think that is why I didn't cry cos I was so overwhelmed with the strange experience. It's like a dream - it is still a dream. It hasn't quite sunk in yet.
I've been using the loop by using a RF TV Listener, which I attach a microphone to the TV and pick up the sounds from the TV although I prefer to hear sounds directly plugged into the TV, however it isn't possible at present due to some electrical fault of the device attaching to the TV. However, I do hear it directly linked to the Hi-Fi and that is nice especially a bit of Jazz!
Mon (5th Nov) I had another mapping for both processors and aided threshold hearing tests and the results are amazing! Here is what my audiologist said.....
Cuny sentences with lip reading both implants: 97%
Cuny sentences with lip reading right implant only: 43%
BKB sentences in quiet without lip reading, both implants: 89%
BKB sentences in noise (noise 10dB less than speech) without lip reading, both implants: 75%
AB words in quiet without lip reading, both implants: 61% phonemes, 36% words
Your aided results with the left implant were 15-35dB across the speech frequency range.
Your aided results with the right implant were 40-60dB across the speech frequency range.
The aided results for the right ear are likely to improve with time and were good for this stage post implant for a newly implanted ear. Also you mentioned that the tinnitus was making it more difficult for you to do this test on the right ear which could also have affected the results.
Overall these results are brilliant so well done.
I was tickled pink that I was doing so well so early on .... one week!!! I think it is fantastic results. Anyway to explain about the above Cuny sentences means a man on the video with a straight face and no facial expressions. He just speak in a plain flat voice!
BKB sentences are sentences sent through the speakers - no man and no lip reading involved.
AB words are words that are spoken through the speakers with just one word at a time, eg, cat. This is a harder test because with the sentences spoken you have an idea of what the sentence is about. With just single words without lip reading or seeing a man on the screen can be a real challenge!
Today (26th Nov) I had a mapping for my right ear only with my left right ear processor untouched. I was puzzled why they didn't do both processors to balance. I realise it is because they want to bring my right ear processor to balance alot more as the past few weeks since 5th Nov my left ear processor had been more dominant and the right ear processor had been fading into the background. They even said that my left ear processor might prefer to have the volume decreased at some point as the right ear processor might find it too loud with the left ear processor. It's interesting that when I had my right ear processor only on it was louder than having both on! Weird, I thought!
Anyway, I had my right ear aided threshold hearing test and amazing it has shifted from 40 - 60dB to 30 - 40dB across the speech frequency range, it still has a dip in the middle of the speech frequency range but I reckon it is because I've got number 5 electrode turned off and not able to pick the middle sounds up as well without this electrode. I could be wrong. However, I'm not worried about that electrode any more cos I've been doing so well lately and I hope to continue on my right ear. I'm so pleased to be able to hear something with it. I've just got to keep practising listening with just my right ear and work on it alot more. I've been so lucky with funding for my 2nd ear that I have to pinch myself sometimes to say yes you have got your 2nd ear. I've been living with one ear practically all my life and so it will take a long time to get used to have two ears. It's amazing with two ears. I only wish some people protect their ears especially with loud music, etc. Believe me, ears are precious because if you hear out of them and then to lose all your hearing it is heart breaking, like I had experienced twice. The first time was in Feb 2004 and the second time in June 2006.
It is so nice to hear again, to hear with nothing and just the tinnitus is a really life quality reduced life, e.g depressing, isolating and stressful. It is because I once had something beautiful with my CI before and it was snatched away from me, hence the reduced quality of life. Now my quality of life is so much more relaxing, inspiring, exciting, not isolating. I don't want to go all religious but I thank God for listening to my prayers.
I shall try and keep more up to date in future! ;-)
It's just hectic and always is still.. I feel really dreadful in not
being able to keep up to date with my own blog and when I read other
people's CI blogs - they are so good at keeping at it.
I have two little boys that keeps me on my toes all the time and by the
time I've got them to bed, all I want to do is chill out. As well as my
little ones I have a big boy too look after - my eldest son who is
nearly 12 does stress me out a lot especially with his moods and
unwilling to do these. He's rather lazy and winds the little ones up
alot that there are lot of screaming sessions - there are times when I
would love silence. Now to say that is strange because I've wanted to
hear again after so long but when you have screaming kids - who wants to
hear that kind of sound when learning to hear with the cochlear implants.
Anyway, as I say it's been hectic and so I'm going to put down as much
as I can remember since the switch on and then try and keep it up to date.
My switch on day. I was very nervous and thought I was going to cry and
everything but I didn't for some strange reason. I think it is because
I know what to expect at a switch on as I've done it before. My left
ear was dealt with first and then my right ear. At first they did some
programming to condition the implant and to stimulate it then I had some
beeps going on. Then it was ready for the switch on. The sounds I
heard was very much like I heard before - high pitch voices and Nigel's
voice was deeper. A few twigs here and there adjusted by the
audiologist was sounding a lot better. I was put on Hi-Res S Fidelity
120 for my left ear. It did take a while to sort my left ear out.
Now my right ear was a different story because it was being switched on
for the first time and never heard out of that ear since I was a baby, I
think. I can't remember ever hearing out of that ear and heard some
beeps but not in the same way as my left ear. When they switched my
right on, I just got "thump thump" etc. Each thump was representing
each syllable, so if I heard a word like brother, it would be sounding
like "thump thump" - two syllable. It was so weird but heard
something. I was just really pleased to just get something than
nothing. I was impressed! I, too had Hi-Res S Fidelity 120 for my
right ear as well. A long time for my right ear to be sorted out too.
When I had both on together it sounded better. I don't know why but it
sounded alot better. Strange! I think that is why I didn't cry cos I
was so overwhelmed with the strange experience. It's like a dream - it
is still a dream. It hasn't quite sunk in yet.
I've been using the loop by using a RF TV Listener, which I attach a
microphone to the TV and pick up the sounds from the TV although I
prefer to hear sounds directly plugged into the TV, however it isn't
possible at present due to some electrical fault of the device attaching
to the TV. However, I do hear it directly linked to the Hi-Fi and that
is nice especially a bit of Jazz!
Mon (5th Nov) I had another mapping for both processors and aided
threshold hearing tests and the results are amazing! Here is what my
Cuny sentences with lip reading both implants: 97%
Cuny sentences with lip reading right implant only: 43%
BKB sentences in quiet without lipreading, both implants: 89%
BKB sentences in noise (noise 10dB less than speech) without
lipreading, both implants: 75%
AB words in quiet without lip reading, both implants: 61% phonemes, 36%
Your aided results with the left implant were 15-35dB across the speech
Your aided results with the right implant were 40-60dB across the
speech frequency range.
The aided results for the right ear are likely to improve with time and
were good for this stage post implant for a newly implanted ear. Also
you mentioned that the tinnitus was making it more difficult for you to
do this test on the right ear which could also have affected the
Overall these results are brilliant so well done.
I was tickled pink that I was doing so well so early on...one week!! I
think it is fantastic results. Anyway to explain about the above Cuny
sentences means a man on the video with a straight face and no facial
expressions. He just speak in a plain flat voice!
BKB sentences are sentences sent through the speakers - no man and no
lipreading involved. AB words are words that are spoken through the
speakers with just one word at a time, eg, cat. This is a harder test
because with the sentences spoken you have an idea of what the sentence
is about. With just single words without lipreading or seeing a man on
the screen can be a real challenge!
Today (26th Nov) I had a mapping for my right ear only with my left
right ear processor untouched. I was puzzled why they didn't do both
processors to balance. I realise it is because they want to bring my
right ear processor to balance alot more as the past few weeks since 5th
Nov my left ear processor had been more dominant and the right ear
processor had been fading into the background. They even said that my
left ear processor might prefer to have the volume decreased at some
point as the right ear processor might find it too loud with the left
ear processor. It's interesting that when I had my right ear processor
only on it was louder than having both on! Weird, I thought! Anyway, I
had my right ear aided threshold hearing test and amazing it has shifted
from 40 - 60dB to 30 - 40dB across the speech frequency range, it still
has a dip in the middle of the speech frequency range but I reckon it is
because I've got number 5 electrode turned off and not able to pick the
middle sounds up as well without this electrode. I could be wrong.
However, I'm not worried about that electrode any more cos I've been
doing so well lately and I hope to continue on this fantastic CI
journey. It is so nice to hear again, to hear with nothing and just the
tinnitus is a really life quality reduced life, e.g depressing,
isolating and stressful. It is because I once had something beautiful
with my CI before and it was snatched away from me, hence the reduced
quality of life. Now my quality of life is so much more relaxing,
inspiring, exciting, not isolating. I don't want to go all religious
but I thank God for listening to my prayers.
I shall try and keep more up to date in future! ;-)
Thursday, 4 October 2007
I shall be waiting for my switch on which is on the 29th October. It'll have been 6 and a half weeks since I had the op. Usually the switch on is between 3 and 6 weeks whereas for some reason my switch on is a bit beyond! Well, at least the swelling on my implants will have gone down and it'll give my ears a chance to heal from the wounds a bit more.
In fact I can't believe how well I've recovered from the op. It's almost as if hasn't taken place. The only reminder is at night when I put my head down to sleep.
I'll be kept busy between now and until the switch on because it'll be my birthday soon and also my youngest son's first birthday too. Loads to look forward to although not chuff to bits about being a year older myself. Time has gone by really quick since last year, it is my eldest son that has made it whizzed by! Being kept busy with him as he suffers from ADD. At times he's brilliant and at other times a real nuisance! But then boys will be boys!
Got some really gorgeous Autumn weather lately in fact it is really mild weather. Most unusual, I think because it is normally cold and wet at this time of year. Just love the autumn leaves and the conkers falling down and the blackberries for puddings, yum. In fact I had better go and bake one for the weekend, a real treat!
Monday, 24 September 2007
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.
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
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
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
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!
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 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 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
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.
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
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
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
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 :-)
Saturday, 4 August 2007
Well it is now the beginning of August and the 7th August is when the decision will be made although I doubt that I'll for a few days as the decision will be sent by post to the SOECIC. I shall wait with abated breath....again!
However, in the mean time I'm focussing on getting ready for my Summer hols soon and this will be a very good break from all the stress of worrying lately.
Weather has been so awful but it looks like there is light at the end of the tunnel now as all the floods are clearing up but has left behind a huge shocking clearup costs! Hope the government will help....be interesting how they will help!
Sunday, 15 July 2007
We have just heard from the PCT - unfortunately they have misunderstood
our request and your case will have to go back for consideration at a
meeting scheduled for beginning of August. We have sent further letters
of clarification today.
We will be in touch again as soon as we have some more news for you.
Hmm, my reaction to that was that I was very angry and found out from someone that the best way to get support was to contact Social Services, NCIUA and the local GP. So I've booked an appointment with the local GP and written a letter to Social Services (Hearing & Vision team) and emailed the NCIUA and go from there. I'm hoping for as much support as possible as it is very stressful for me to keep an eye on my kids all the time as cannot hear them, such as potty training, running around, falling over, learning to crawl, all sorts of sounds that I'm unaware of and it pains me that I'm missing out so much.
I'm hoping to get as much support for the meeting begins in August.