Post Implant Test 
Monday, April 25, 2005, 04:10 PM
Pre Implant Test Results are:-

On the BKB Sentences test (with no background noise) I got 9%

On the CUNY Sentence (lip-reading and listening) on my right side I got 87% and on my left side I got 78% and with both hearingaids in I got 100%

Pre op my pure tone audio-gram was

Right ear (decibels) 65, 85, 100, 105, 129, 115, 120
Right ear (hertz) 125, 250, 250, 750, 1000, 2000, 3000

Left ear (decibels) 70, 65, 95, 120, 120, 115, 120
Left ear (hertz) 125, 125, 250, 750, 1000, 2000, 3000,


Feeling quite depressed about this!

[ 7 comments ] ( 231 views )
I am so excited 
Wednesday, April 20, 2005, 02:07 PM
I am feeling VERY VERY VERY emotional!!!!!


When I talk to people at work - and its not even CI related I have a quiver in my voice like I am going to cry - my eyes filled up a few times too ( I feel like crying but cant for the life of me say why!)

I am really scared too. I called Debora Mowman today to ask what CI implant and processor I was getting. She said the freedom implant - I don’t know if I am thrilled or scared to death! It only came out in April 2005 what if it gets recalled like the Advance Bionic? what if it’s not as good? what if there are problems with it!!


ooo I'm so nervous! Not of the surgery - but of what’s to come – what if my brain wont adapt. what if I hate it. what if I think I've made a mistake. what if I actually have more hearing than I thought and now its gone!

My mind also has gone into over drive :- I want a radio, I want an ipod, I want a new mobile!!!!

I cant sleep because my brain (not me) keeps wondering what its going to sound like, how much I am going to hear, and how I cant wait!!!!!

Tomorrow is my last day as Wednesday I have two appointments at Manchester CI Centre one is for post op check up and I am not sure what the other is for.

When I first got asked which implant I preferred I was actually thrilled. The reason being is I read everything I could get my hands on asked heaps of questions on this forum and the American forum and also spoke a lot to the consultant.

What I did hate and it haunts me to this day - is the surgeon asked what side I wanted it in. Apparently there is so little difference in either side that it does not matter....

I am scared that I am going to think ohhhh I should of had it in the
right hand side not the left! (I am right handed so I’m sure I’ve made a mistake)


[ 6 comments ] ( 120 views )
It has been approved! 
Monday, January 31, 2005, 02:05 PM
I got to meet the consultant who told me that I could go ahead and have a CI. They said that the recommended waiting list guidelines recommend a person should wait no longer than six months.

I was also given the choice to decide which side to have it on – talk about pressure! This was because I did not have a good side. I chose the left - what I feel is my worst side – but now wish I chose the right! Never mind…..

I was told to have the meningitis jab and given a letter to give to my GP. It really confused the general nurse as apparently children normally have this jab at school. What the letter did not make clear was the jab had to be against the pneumococcal infection which as well as meningitis.

I went back to work after the jab with the warning I might feel like I have a touch of flu – I felt fine but my arm hurt for 4 days!


[ 7 comments ] ( 15 views )
My Cochlear Implant Journey 
Tuesday, July 20, 2004, 02:00 PM


Intro

This is all a bit back to front really! But I will try and explain. After my implant we decided to take photos so we could see the healing progress and we were shocked to see how quick it was. I made the comment that it was a shame that I could not do something with the photos and my partner suggested putting them on my web page and so this link was born

As I was so grateful to my surgeon and all the staff for their hard work – I put a copy of the page on a CD and gave it to them as a present to say thank you.

I then decided that I wanted to put my journal on the web page too and it was agreed that the best way to do this would be to turn it into a blog!

This blog does not have a beginning, but it does reflect on elements of my past as well as my present and future.

I hope that this will be of help to any one considering a cochlear implant – I wish you the best of luck on your journey.

I was told by a fellow CI user to hold on tight for the wild ride; little did I know how right she really was.

The Beginning!

I was born with the cord wrapped round my neck and my mother had been in labour 48 hours. She tells me that she knew I was going to be a problem growing up, as I always seemed to have to do things the hard way!

Nobody really thought there was anything wrong, yes I was small but so was my mother. I did not put on weight very well, but still no one read anything into it. My mother used to be too embarrassed to undress me to be weighed because I looked half starved she said. She even burst into tears one day at the clinic when a nurse told her that I was a good weight for 9 months and my mother screamed "she is a year and nine months!"

My mother realised that someone was wrong with my hearing at quite a young age and by the time I was four she was back and forth at the GP asking for tests to be done.

Being a clever little girl I passed all these hearing test by being able to feel the beeps or lip-read. One of my earliest memories is placing my hands over my mother's voice box and feeling what she was saying as a way of aiding what I was lip-reading. It made things so much easier that I listened this way often.

Poor mother was called neurotic in my medical records (this was later removed by magic) and I was called simple (cheek) and slow (bloody cheek) so my mother stamped her foot and demanded a IQ test which to everyone’s surprise came out quite high.

But it was not until I was six that my mother finally got what she had been asking for all along, a referral to the Ear Nose and Throat hospital that promptly diagnosed me as being moderately deaf in one ear and slightly deaf in the other.

I can remember the intense pain as they put the silicon into my virgin ear to make the mould so that I could be fitted with a hearing aid. It was so painful that I screamed and cried and everybody wondered why I was making such a fuss.

I was fitted with my first hearing aid about 6 months later. The moment it was turned on, I tried to rip it out. The sounds were loud, harsh, and painful. Everything single sound from the quietest sound of paper rustling to speech to the loud sounds of cars was amplified to a high level and together it sounded like a world full of monsters roaring to get me.

My mother spent quite a few months fighting to get me to wear it and I spent equally the same time fighting against it. What mothers fail to realise and what professionals do not tell them is that sometimes when the ear gets hot it produces water which can go down the tube and into the aid. You can be minding your own business one minute and the next minute jumping six foot in the air as an almighty buzzing suddenly starts in your ear. Or it will make a terrible whining sound which nobody else can hear but you, and sometimes if there is a loud sudden bang it could kill the batteries all together.

I must have been about 8 or so when they realised my hearing in my other ear was also getting worst so I was fitted with two. This actually worked out much better for me as I was already used to hearing with one and adapted very well with two. It seemed to even things out.

As I got older I seemed to get a new hearing aid almost every year. The only problem with this was each model sounded different from the one I had last. It was almost like learning to hear all over again as the whole world would sound completely different. I guess that gave me plenty of practice till it came the time to have the implant!

When I was 12 it was discovered that I had a hole in my heart. My mother joked I could just not be satisfied with being deaf I had to go and have another problem too, and she could never understand why I had to be so greedy. (at least I think she was joking) In typical fashion I also had to be difficult and the doctors were left scratching their heads wondering why my heart had suddenly decided not to work. I was one of the rare cases where they fitted a pacemaker but just could not figure out why I needed one. Eventually they did find the hole and make the discovery that it had damaged one of the values in my heart as well. So I was stuck with the pacemaker, which was not too bad as it gave me more energy to run about.

The only problem was, now that I had one implant in my body which was restrictive as I had to have operations every 8-10 years I was very much against having another implant if I could avoid it.

The way I saw it was, I could cope with the fact I needed a pacemaker in my chest. But the thought of having something in my head made me fell cold. Almost as if I would not be human any more, that I would become something different, a completely different spices and I was so tired of feeling like a freak.

One of the other reasons for my reluctance to have an implant was it seemed such a drastic step when hearing aids were enough for me. Being able to cope with my deafness and being a good lip reader was part and parcel of who I was. It felt like I had been stripped of that identity when hearing aids became pointless and lip-reading became harder.

I also was very aware that the operation to have the implant put in could cause injury to the facial nerve - this nerve goes through the middle ear to give movement to the muscles of the face. It lies close to where the surgeon needs to place the implant, and thus it can be injured during the surgery. An injury can cause a temporary or permanent weakening or full paralysis on the same side of the face as the implant.

Meningitis -this is an infection of the lining of the surface of the brain. People who have abnormally formed inner ear structures appear to be at greater risk of this rare, but serious complication.

Cerebrospinal fluid leakage-the brain is surrounded by fluid that may leak from a hole created in the inner ear or elsewhere from a hole in the covering of the brain as a result of the surgical procedure.

Perilymph fluid leak-the inner ear or cochlea contains fluid. This fluid can leak through the hole that was created to place the implant.

Infection-to the skin wound.

blood leakage Blood or fluid collection at the site of surgery.

Vertigo - Attacks of dizziness

Tinnitus - which is a ringing or buzzing sound in the ear.

Taste disturbances -the nerve that gives taste sensation to the tongue also goes through the middle ear and might be injured during the surgery.

Numbness- around the ear.

Reparative granuloma-this is the result of localized inflammation that can occur if the body rejects the implant.

were also all a big worry.

As I have not had the best of luck in the course of my life, if this did happen to me, then not only would I be deaf, have a pacemaker, but I would be disfigured as well! I would cringe at the image of myself as an old lady in my minds eye, with a false eye and wig as things started to drop off and die. It was all too much and I just could not contemplate having an implant at that stage.

Over the years I have become quite proud of my pacemaker and when it became time to change it because the battery was low I felt quite sad. It had seen me through so many chapters of my life, university, meeting my first love, living independently, passing my driving test, friends I have met, buying our first house etc. That it had became very much a part of me. It became so much a part of me that I insisted that they gave me the old pacemaker back, when they removed it to put a new one in. I now have the old one framed in my office.

Due to my strong attachment to my pacemaker being removed in June 2004 which I felt at the time was very much a part of who I am, my mind set about having a cochlear implant started to change. I realised that a cochlear could have the same impact in a very different way. It would be able to enhance the way I experience life, in the same way that my pacemaker enabled me to survive, and have a life.

Once I got this small matter sorted I was on my way to becoming a real girl!

Further reading on the cochlear websites and forums convinced me that this was the way to go and I never felt more ready to ask for a referral although I was also very scared that if it was the wrong decision then I would lose what little hearing I had. However I was willing to take on the risk.

The Journey to getting a Cochlear implant.

We moved to our first new home in March 2004, my original referral for a CI in December 03 got lost in the system and I made another referral when registering with the new GP in March 04.

The start of the CI assessment was in July 2004 at Manchester CI Centre for Adults. There was a heap of questions about my hearing history, family history, GP info, why I had asked for a CI assessment, what I hoped for in the future, what I found hard about being deaf, how it effected my life, social life, work life, my partners life, and hearing tests done by Deborah Mawman.

One of the tests was with my current NHS aids to see how they were helping me, the other tests was without aids, this showed that my hearing was really quite poor and I had very little useful hearing.

Session two

I got booked in for a cat scan because I am unable to have a MRI due to having a pacemaker as I was born with a hole in the heart.

Session Three

Then I had another appointment with the audiologist to try new digital aids that apparently just came on the market. This was done by James Mander Audiologist for the Adult Cochlear Implant Team.

I really liked them because they have two settings, one for general use, the second I use when speaking to my partner in the car or when we are in restaurants where it’s loud white (useless) noise. It helps all the sounds go away and makes the white noise softer and I can lip-read and hear my partner (as much as I am able to) better.

We noticed I could repeat single words that my partner was asking me while I had my eyes closed. This caused a rush of excitement for both of us because it had never been possible before. Out of 100 words I probably got at least 30 right.

Session four

When I had the follow up tests probably two months later to see how I had got on the audiologist said there was very little improvement.

My partner was a bit surprised by the lack of improvement and that night we repeated the test where he asked me random single words, which I repeated back to him. I did not get a single word right. My hearing was going faster than I had realised.

Session five

Then I had tests where I had to lip-read a guy of the TV (the worst test ever) I never lip-read of the TV as its hard lip-reading someone face on. Also I am sure the guy was not pronouncing words correctly as there is a big difference between mouthing words and saying them. Anyway – I did great when I had aids in and lip-read – probably got 80-90%.

I did terrible with just lip-reading – probably 30-40% maybe less.

I got 0% with just sound. All I heard was tic tic tic tic!

Even so the result was a surprise to everyone because I did so well with the aids/ lip-reading together.

Then I met a lovely lady who had her CI switched on four weeks before meeting me and she was doing very well. I had heaps and heaps of questions to ask her and saw her scar etc. It was quite mind blowing and a bit upsetting because I still had not really been told if I could have one or not and this lovely lady was telling me it had changed her life!

Session Six

I was shown the three different types of CI:

Advance Bionics,
Med-El,
Cochlear.


I thought the Advance Bionics processor was massive and it uncomfortable when I tried it on. Also at this time the Advance Bionics was being re-called because of a fault, and there had been a lot of bad press.

The Med-El was chunky and I did not like the way it felt, the implant looked bigger than the others too.

The Cochlear was bigger than I expected but felt quite nice on, it was also the first CI to come on the market and has a history going back to 1975.

I was asked which one I would like if I was given the go ahead – Talk about raising expectations!

I chose the Cochlear Nucleus Implant because it has been around the longest and seems to be advancing very quickly. Also the he hinted strongly (we felt) that it was probably the best one out of them all. I then was asked what colour I would like (silver).



Of course the choice I made is only my personal preference and I did a lot of reading and research before hand and asked lots and lots questions to the people I met on the CI forum and the Yahoo CI UK forum that Alison kindly set up.

I had to fill in a questionnaire which asked me what my expectations of a CI was, how much I thought it might change my life, what I hoped it would give me, how I felt about my life now, and how I hoped a CI might improve my life.

I felt that it was a very difficult questionnaire as it was on PC Screen. I only got one chance and I had to rate it from 0-100%.

At this stage it had been 10 months from the point of referral and I wondered how much longer it would take.


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