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)


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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.

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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

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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

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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.


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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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My operation has been cancelled 
Thursday, May 26, 2005, 02:10 PM
James tested me to let me know that my surgery had been cancelled – I was surprised by the crushing feeling of disappointment quickly followed by explosive anger. I called the admin staff that informed me the lady I have to speak to, was on holiday and would not be back till Tuesday. It was a depressing weekend waiting for the hours to tick by. An even more frustrating morning when I called the admin staff only to find that they did not know when the new date would be or how long it would be before they did. By Wednesday I was pulling my hair out as I found the surgeon was now on holiday and not due back till the following Monday! I felt so down that I could not even think about going back to work. A part of me felt like screaming forget it! The disappointment was so incredibly overwhelming I could not even begin to describe why it was so devastating to me. I continued to call people one after the other each one more senior than the next finally on Thursday I was informed by email that my operation would now be on Monday 13th June. A sense of relief came over me – quickly followed by fear. What if they were wrong? I quickly emailed the last senior manager that I had spoken to, who confirmed that the information was correct and the reason why the surgeon was different was because he had a cancellation and was able to fit me in.

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I had my pre-op assessment today 
Wednesday, May 25, 2005, 02:14 PM
I saw James the Audiologist first who did a repeat of all hearing tests with and with out aids. Then I had the video again. My partner reckons I got all the lip-reading (with no sound) correct apart from the odd word. I got most of the lip-reading with sound correct and I got nothing with the just sound video. Even when I thought I heard
clear sounds like word "the" - My partner said it was actually something completely different!

I also had to fill in another three questionnaires - one about how I feel about my tinnitus, one about my expectations of the CI (again) and the other was about what support I have i.e. family/ friends.

I still to this day believe that the guy on the video is not lip- speaking correctly. Or he has some strange accent! Every time I have the test it gives me practice with his lip pattern so I’m sure I am
doing better now!

I spoke to the nurse who asked heaps of normal questions about my general health and if I have ever suffered from things like chest pain, dizziness, etc. She took my weight (them scales are WRONG!) and blood pressure 100/60 (always very low for me although seemed to shock the nurse)

Then I spoke to the consultant who had a few more questions like did I have heart mummer (yes) diabetic (no) stickle cell (thought that only effected black ethnic groups?!)

Then I had blood test (brilliant nurse did not even feel it go in) and finally a E.C.G that I had to take straight back to the consultant who said yep your pacemaker is working fine (I was really surprised she read it so quick!)

Had an opportunity to ask all my questions and got a brochure regarding the freedom CI processor that is very interesting and exciting.

Had some lunch then slept from 2-7pm! I have been too excited to sleep this past week and not been able to get off till 3 am for most of the - so it was defiantly needed!

Only two more days to go!!! It will defiantly be admission on the 27th at 3pm and surgery in the morning on the Saturday.


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I recived the operation date 
Wednesday, May 11, 2005, 02:06 PM

Today I received my op date and post op assessment date in the post. It was so exciting, I could tell from the envelope that it was from the cochlear implant programme centre and I was shaking as I opened it. It was a shock when I read the letter as my op will be on Wednesday 27th May 2005. I had to read it several times before it register that it really was the operation date and my mind was not playing tricks on me. I immediately texted James and my best friend Debbie and Russ, and then informed everyone on the CI forum of my news.


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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!

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