Day 4 
Monday, July 4, 2005, 04:13 PM
I went into town today and for the driving I wore both my processor and my hearing aid.

I turned it off when I hit the shops. When I ordered lunch I turned it back on again and forgot to turn it of. After I went to a big shopping mall and noticed I was hearing really well.

I heard voices clearly when I was in the changing room and I also heard two people talking quite clearly behind me when I was looking at dresses. I realised that I had left my hearing aid on – but what an improvement from Thursday where even with both the processor and the hearing aid on I noticed very little difference.

Just goes to show that giving your brain a work out without the aid really is the key.



Day 3 
Sunday, July 3, 2005, 04:11 PM
Today I was sitting in the computer room (very noisy apparently) and we had the air conditioning on in the next room (really noisy - although I cant hear it if I am not in the room)

James was in the loft doing men's things *grin* and he called me and I heard my name sound like "OoEEEEEEEEEE" which made me look up and think did I hear my name? He called me again and I heard my name...

Just not the zzzz part of it....

I last heard my name when I was about 15 - Other people started calling me snowy and coz I could not hear it, I never corrected them until someone else would say is your name really snowy as in snow?

*lol*

Drove to Manchester Hospital today to make sure I can get there ok. Only got lost once coming back!


Day 2 
Saturday, July 2, 2005, 04:08 PM
Last night James and I played a lot of his music (anything with bass was ruled out) things without bass I had to listen really hard but I could make out a beat or feel of the music and mimic it back to James what it sounded like to me. We were surprised to find I was actually verbalising the words not the music *not something I have been able to do b4 - normally I can pick the beat out from the bass)

It’s actually quite nice to listen to (bit to quite tho) as it helps stimulate my brain - James also read to me and I could see the difference after a 20 min or so of hard listening.

We are planning on obtaining talking books and a radio (even if for background noise) so that my brain can listen even if I don’t understand or follow it....

Today I have worn it for six hours and its not felt to bad (I have been wearing it four hours then two hour break then a further two hours the last two days) it helps to play around with the magnet strength as if its too strong it gets hot and uncomfortable....Once its right then its fairly conformable to wear...

The setting is still on very low (bit to low now my brain has got use to it) and I am identifying new sounds everyday.... I heard the music to the cat advert the other day... and I heard the kettle boiling yesterday... Oh and I heard my car boot lock as well (normally I have to check it so I know its locked) I was so thrilled I heard it. It was a thrilling experience...


Oh another lovely thing I am enjoying is mould free ears (they have been cool and dry all day) lovely

I do wear my hearing aid when I am driving tho!!

I can hear when the overhead announcer in ASDA comes on and off (never realised it was consent!)

I can now hear beeps with the telly on loud

James said a list of places in the UK while I listened (with my eyes closed) and out of about 20 places I got 5 correct and just heard the rest but could not identify them. I was stunned to hear the word London, Liverpool, Essex, Basildon, and Newcastle.


One day after switch on 
Friday, July 1, 2005, 04:07 PM
Some one from the CI Forum on Yahoo

http://health.groups.yahoo.com/group/ciug2004/

said the three P’s of having a CI are:-

1 Patience
2 Practice
3 Perseverance

Today I was feeling sorry for myself coz of the racket that I was getting while in the car. Turns out that its a bit much with the fan on 4 and the map navigation going as well.

Once that was turned down James got a call on his hand free mobile and I could hear the person speaking (no idea what they were saying) but not James! (James just sounded like beeps) But it really cheered me up!

While in the car (with the window down) I head beeps and thought what could they be - I think it was people walking by nattering so that was quite cool.

Strangely I heard their dog cough (bark maybe? sounded like a cough) really well!

I wore the processor for 4 hours and then later on in the evening for a further three – it does not feel like I am hearing much more than beeps but I did hear the music in the cat advert (very soft) which really cheered me up.

While typing this – if I listen carefully I can hear James tapping on his keyboard (so quite).


Swtich on day!! 
Thursday, June 30, 2005, 04:03 PM

We went to Manchester Cochlear Implant Centre at Manchester University today to have my implant switched on. I met Amy Donaldson who is the audio tech and Martin who is the head of the CI project for freedom processor in the area (I think). I have been told that I am the second person to have the newer implant and freedom processor – the software for it is so new that everyone is still learning how to use it. Apparently it’s quicker to set up, faster and easier to use and has more capabilities some which they are not fully sure of or understand yet.

When I arrived to have it switched on there was Amy and Martin who both spent a long time talking to me (I was thinking in my head like "yes yes yes yes yes.... I knowwwwwwww can we start now????" *lol*) as they were trying to prepare me for the switch on.

Martin knew all my background history (even had hearing tests from when I was four!) He talked a lot about how important it was to understand that I might hear sounds that I have never heard before and I would not be used to it.



First they opened the programme, which checked the implant was working – it was quite impressive to see each electrode light up on the cochlear logo. This confirmed that everything was in working order.

Then I had some beeps sent thru the processor, which sounded like a normal hearing test – this set my tinnitus off quite badly and it was very difficult to hear the beeps.

I was setting there waiting and everyone was looking at me because I had not responded and all of the sudden I realised what I had been listening to for the past few minutes was not actually my tinutes it was a two tone beep and I looked up in surprise and Amy smiled and said “You have been hearing that, haven’t you”. She counted the beeps as they came to me, which helped me make the comparison between the sounds and my tinnitus – I got quite excited by the fact that I was hearing the beeps

I then had to let my tech Amy know when I heard the sound, when it sounded soft, medium, loud, to loud. None of the beeps sounded soft to me! I could not tell what sounded Medium only what was loud and too loud.

The Amy tested the electrodes in sets of five, which I confirmed I was hearing.

Then it came to the big moment – she turned it on and I waited, waited, waited and about 5-10 seconds later jumped six foot in the air and said turn it off!

The sound was SO LOUD, it was not human, terrible screeching, growling, beeps, pops, squeals and nasty sounds I can’t explain were coming through.

Amy played with the settings a bit more, we tried again, same thing happened but a bit softer (not much tho) it was still pretty unbearable. Amy turned it down a little more and I told her that I really found it unbearable – but Amy was reluctant to turn it down much further as it was on a very soft setting (could of fooled me at the time)

After about 20 minutes the sounds settled down a little and when Amy or anyone else spoke I could hear a beep for each word. I could hear it beeping when I spoke. It sounded like someone was pressing the highest key on a piano every time someone said a word. I was thinking oh my this is terrible its not going to work – but then I realised I could only hear beeps when there was a sound to be heard. Amy felt this was very positive but due to my brain being so sensitive to the sound coming through it was not possible to do a true map – So I have three settings, each one more loud than the first.

Martin stood behind me and made the sound shhhhhhhh churrrrrrrrrrrrr hissssssssssssssss cheeeeeeeee and I honestly thought he had something in his hand to make this massive racket, which was high pitched, and shrill sounding. I looked at Amy and she was setting quite comfortably, I looked at James and he was the same so I turned around and said what on earth did you do? You could of knocked me down with a feather when he told me all he was doing was making the sound shh!

Although both Amy and Martin really tried to prepare me for pre-switch on and post switch on - nothing can.... I actually could not hear a thing and could only tolerate low beeps anything more powerful makes my brain feel like it was going to pop (incredibly frustrating) so I have it on a very low setting at the moment.... BUT I am not hearing useless things that the hearing aid would crank up that ends up muffling the speech I am just hearing speech (and beeps) on a very low setting. So it does give me a lot of confidence.

I think you will find that a massive bonus when listening to speech...

I thought to myself well its pointless crying about this coz I am not surprised about the result – I have not heard clearly since I was about 6 years old. I can hardly expect to hear true sound 60 minutes after switch on. I was disappointed tho, I think James was to coz I really could not hear much.

We went for lunch and about an hour in to lunch James was watching me with fascination as I was tapping the plate with my knife – yep! I could hear the metal clipping the plate quite well…. I also had a go with a spoon on my coffee cup (same result same sound) then I realised I could actually hear footsteps as someone walked behind me quite well too.

I kept it on in the car and when we got home we had a look at all the goodies in the CI box and turned the setting on to number two. The beeps were louder, I discovered I could hear the sound clip clop clip clop (the same sound you make with your tongue to imitate a horse hooves) very well. I spent the first hour humming and making babble sounds, which eventually made my voice, stop being beeps and start to turn in to sounds. We turned the processor on to setting three, again the beeps were louder. James read to me for an hour or so and the beeps started to merge into themselves and ever so often I heard a mechanical voice (that I had to lip-read)


13 days since the operation 
Sunday, June 26, 2005, 04:01 PM

You can still see some light bruising around the scar and back of my ear but the bottom of the scar seems to have disappeared into the creases that were always there. It feels a lot better without all the swelling.



It's looking better every day. The swelling on the back of my head has gone down a lot and I can now feel the small bump where the implant is. My tongue feels almost normal now although sweet things don't taste as they should.

My hair is growing back nicely although it is a bit itchy where it's short.

Today I had the stitches out 
Tuesday, June 21, 2005, 02:31 PM
The stitches came out a week after the operation, it did not hurt to much. Everything is healing quite well . The scar looks much better now and less swollen.



James came up with the idea to do a webpage to show the progress of my ci. I watched him write the webpage for it and the idea was that I could use it to share with the hosptial to give other people who were thinking of going for a ci information.

I thought he was really clever to be able to write a webpage from notebook and told him so. James told me that he would teach me how write my own page and thus my home site was born!

I am very proud if it.

http://www.tomlinuk.com/index.html

First Photo one day after the operation 
Tuesday, June 14, 2005, 03:52 PM

I was a bit shocked about how much hair was shaved off, so far it's not been too painful. I wasn't expecting the scar to be that big!!




At the moment I am not in much pain and I am sleeping well and taking it easy

My operation date - here at last! 
Tuesday, June 14, 2005, 02:30 PM
I was amazed that I finally got here. The shower mind you was not very clean and I asked the cleaner twice if he could clean it. I came out of the shower the first night covered in hair that was not mine *urgh*

I have had so many operations that I am used to it now - so I always
take with me the jiff bathroom wipes, a bottle of dettol disinfectant spray which I spray on loo seats, taps, floor, shower tray etc. Baby wipes, and tissues. I know it sounds a bit over the top but I use them ever time I go to the bathroom or shower. I also use them on my bed frame and the bed side cabinet. I have never had an infection or a problem. I think it pays to be careful. So many ill people using the facilities and they are not taking the time to wash their hands etc as they feel so rotten they just want to make it back to bed.

Problem is that’s how infections start. You should have seen the dust
on my bed frame. I mean that’s human skin etc. eww

Everything seemed to be going really well and the anaesthetist came to speak to me about an hour before the operation was due. I said “you do know I have a pacemaker right?” and he said no! I couldn’t believe it – I have made a point of telling EVERYONE since day dot.

The surgeon came to speak to me and let me know all the risks i.e. risk of the facial muscle being paralysed, risk of infection etc he did say it’s never happened to him yet!

Then a guy came to speak to me about my heart problems, they did not know anything about it, it was not on any of their records. I told him that I kept telling people about it every time I came to the hospital for one of my appointments. He explained that they know nothing about hearts so did not realise the significance of it.

It looked as though I was going to miss my slot in thereafter, and the operation might have to be cancelled. The guy said when was the last time you had the pacemaker checked, so I said well you have a heart ward here why don’t you arrange for them to do a check now?

So that is what they did. A lovely lady called Ros from the pacemaker clinic came down with her computer. I told her what was going on and how important it was for me to get this operation done and she told me not to worry she would not let them cancel. Ten minutes later I was on my way down to the theatre!

http://www.cochlear.co.uk/
It wont be long before I become a cochlear implantee!

When I came round I was in a lot of pain, a post op nurse never left my side and she gave me morphine to get the pain under control – it took about an hour or so and by that time I was so spaced out on drugs that I could ignore the pain! It felt like a cork screw in my brain! I slept a lot. My partner came to visit me and took some photos.



The following day I was well enough to have breakfast, get myself dressed and showered and walk to the x-ray department. I had no dizziness or balance problems.

The only thing I did notice was I had lost some sense of taste and sensation on my tongue but I knew this would not last long.

We had a sneaky look at the x-ray photos and it was amazing to see the implant, the wires and the actual swirl of the sensory part in my cochlear! I will have to try and beg a copy of the x-rays when I get a chance and post them on my site with the photo’s we will take.


My new operation date is the 13th June 2005 
Friday, June 3, 2005, 02:14 PM
Apparently there has been a cancellation and my new date is on the 13th June (gulp hope that’s not bad luck?) its no longer with Prof Ramsden and its now with Mr Saeed (I am told he is very fast in surgery, not sure if that’s a good thing tho!) I don’t know how to feel about it all really. I am to worried to feel excited and scared of being disappointed again.

I am really worried by the fact I have a different surgeon because I keep thinking what if he is not as good as the other one? and so what if his fast - what if he makes a mistake because his rushing?

Stupidly more fears popped into my head each passing day, and I am constantly worrying about every little thing. I can’t stop reading up on the various CI websites and sleep is hard to get. The little CI forum in yahoo has been such a support and it helps to speak to others who have been there or are in the same boat as me.



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