29th September 2008 - switch on day!

Yesterday I got switched on. The whole process was very nerve wracking and emotional - here's why. My appointment was at 10am and first I had to find the lowest sounds that I could hear with the implant. The first time they sent a sound through my implant into my nerve was extremely strange. It felt like there was an electronic pulse going through my head and it made a kind of "whum" noise. The first few times this happened I twitched my neck and couldn't believe that's what it felt like! Then it turned into sound and the noise was high pitched. The audiologist lowered it and lowered it until I could no longer hear it. This was very difficult and I had to do it again and again with different frequencies. The next exercise I had to find what was "comfortably loud" for all the frequencies. This exercise was even harder than the first because it's impossible to know what volume I can tolerate high pitched noises at for a whole day! I cried during this bit because it was so hard and I was also feeling like "is this what I'm going to be hearing when they switch it on properly? High pitched whistles?. Once I'd got over it we finished this and then they turned it on!

At first I had a continuous whistle noise in my head/ears which was quite uncomfortable and then gradually within a few minutes it had faded and I was only hearing it every time there was a high pitched speech sound or another sound. However, high pitched speech sounds feature very often in conversation! I ended up hating the word "so" because it really penetrated my head. We then had to adjust my lowest settings as I'd got used listening with it and could actually go lower. They then sent me outside for lunch and I had to return in an hour to pick up everything else and my Advanced Bionics monkey! (Their mascot is a monkey.) I walked outside and I couldn't hear anything. I spent the majority of the time in what felt like silence and only high pitched noises penetrated this "silence". However, when I took it off I knew then it was really silent. Because they've set it so low I can barely hear anything but I know there's constant noise because it's not what it's like when it's off. I absolutely hate it at the moment because I know there's so much more noise I should be hearing but I know there's a lot more tunings and hard work to come. Ant shouted at me really loudly with my back to him and I didn't hear him. Or I might have done but everything's so jumbled at the moment I can't make sense of it. The only time I recognise a sound in this high pitched jungle I'm living in at the moment is if it's a solitary sound that I'm aware is happening. For example, putting a cup down on the table, turning a page, sniffling and so on. The only sounds that sound like they should are the wind and my sniffs! Kissing Ant isn't very pleasant because every kiss is punctuated with a high pitched whistle. I hope it develops as time passes and I don't have to live with this all the time... My next tune isn't till Oct 10th so I've got what feels like a long time to wait!

The period in between op and switch on...

I can't believe it's been almost a month since I wrote a new post. I've been going through an intense experience since then. I had a check up with Mr Gray on the 9th September and all was fine, I had an X-ray and got yet another sick note for work! I started back at work on the 16th September and it's been difficult managing with one hearing aid. It took a long time for me to be ready for work as I couldn't drive as this involved turning my head quickly and I couldn't do that without losing focus for a few seconds. Another thing that affected my speedy recovery was my tinnitus. If I overexerted myself or heard a loud sound this would trigger off a noise resembling a plane taking off in my ears or drums beating over and over again. I found it very difficult to be in Tesco in the first few weeks as I couldn't distinguish between all the different sounds - children talking/screaming, people talking, trolleys and general hubbub. Based on this, I knew that a classroom experience was going to be difficult and it was but I have slowly got used to not being able to localise sounds and tried to relax a bit. Apart from now battling a cold I'm feeling almost 100% and it's nearly 5 weeks since the operation. My scar is healing very well and my hair is about 8-10mm long and growing far quicker than I expected it to! I have taken photos but I'm not able to put them up on here, sorry.

My switch on date is 29th September! I had hoped it would be sooner but I just have to be patient. I'm worried I've made the wrong decision but I've done it now so I'm commited - ooops, bit late to decide that! I'm only worried because I've no idea what I'm going to hear when they activate the implant. I hope that people's voices sound normal. That will be the hardest thing to cope with, I think, if people sound different. I'll be patient and I'm not expecting miracles or for it to sound like I expect it to sound like. I'm quietly optimistic about the long term future though, it's so exciting to think I might be able to hear without lip-reading, talk to people through closed doors and maybe even hear on the phone. :o) We'll see.. It's going to be so weird having a magnet on my head (I can feel where it is) and I'm not sure I'm going to be happy with the fact I've chosen a rainbow coloured cap! But as Anthony said, I should be proud of it, not want to hide it... Haha! Watch this space!

8 Days Later...

And I'm almost back to normal! The dizziness slowly improved and I am now able to respond to the sound of my name at normal speed as opposed to turning my head very very slowly in whichever direction needed.. I'm no longer walking like an old woman either and can walk up and down stairs unaided now. I used to go up a stair at a time and had to hold onto the banister! Around about the 3-4 day mark I felt able to do things for myself again. I have been sleeping fine which is nice as it means I'm not tired during the day. I managed to do a trip around Tesco on Tuesday and I walked around Ely on Wednesday which was lovely as it was so nice to get out again. I did feel tired after these things but not overtired. I scratched my scar on the 2nd night whilst sleeping which made it bleed a little and now it looks worse than it should because of all the dried blood but otherwise all is healing well! I put my hearing aid in the implanted ear yesterday and turned it on and could hear... nothing. Absolute zilch. I already knew that I was going to hear nothing though because I couldn't hear Anthony screaming in my ear. This made me very upset and I had a little cry, it was so strange to realise I'm never going to hear naturally again in that ear. It did make me think whether I've done the right thing but now I just have to look forward to switch on date (which I don't have yet) and look forward to better things. I'm going to see Mr Gray on the 9th September for a check up and hopefully switch on should be shortly after that!

Friday 22nd August - my birthday!

I didn't eat anything at all yesterday, didn't fancy anything. I ate a few bites of cucumber from my sandwich as it had lots of moisture.. My mum ate my dinner for me! I got woken up today by the catering lady at 7:30am for breakfast and I'd ordered a croissant, yoghurt and special k cereal so this is what was put in front of me. I only ate the yoghurt and drank the orange juice. I wanted the croissant but couldn't face chewing it! Mr Gray came in about 8:30am and removed my bandage. This didn't hurt at all, I expected it to. He was very happy with the wound and said that the operation had gone very well, it was just under 2 hours long. He managed to get all the electrodes in and all the way into the cochlear so that's great. My hair was all over the place and had dried blood in it so I was not looking good! He also took off more hair than I was expecting him to but 'ce la vie'... I couldn't face brushing the tangled mess and I was still suffering from dizziness so I left it and walked out of the Nuffield with my mum and boyfriend - still wearing my pyjamas - at 10:50am. I made Anthony drive like an old woman on the way home as I was still trying to gain complete control of my stomach! I turned 23 today but didn't feel like celebrating it. I share my birthday with my younger brother who's 4 years younger than me and this evening he had friends round in the garden and they were drinking and having a good time. Unfortunately I couldn't join them! I'm staying at my parents for a few days as my mum wants to look after me which is nice. I've got purified water with a straw and anything I want at the drop of a hat! :o) Still not eating much and my tongue is numb all down the right side but I'd rather have this than a dropped face or one of the other possible side effects! I'm very lucky really..

Thursday 21st August - Operation Day!

As expected, I didn't sleep very well last night and was so glad when at 6am my alarm went off because I could finally get out of bed and get on with things! I didn't feel too nervous and packed all my stuff up and went to pick my Mum up with my boyfriend. We were a bit late arriving at the Nuffield at 7:30am but all was fine and I was taken to my own room very quickly and we settled in to wait for Mr Gray. I changed into my gown immediately and was given some anti-thrombosis socks which kept my legs warm! Mr Gray came around and said that he had two children to operate on first *groan* but they were simple operations so he hoped to have me in the theatre about 11:30am. That was quite a wait! We passed the time by watching the Olympics, laughing at the people on Jeremy Kyle and reading magazines and doing puzzles. What fun(!) 11:30am came and went and we joked about how Mr Gray is optimistic.. 12pm and the nurse came into my room and said "they were ready for me in theatre" ARRGGGHHH!! The moment of truth had finally arrived and I didn't run for the hills.. I wasn't allowed to have anyone come down to theatre with me so I hugged my boyfriend and my mum and said "see ya later"... Being put under was not a pleasant experience, two men pinned me down and put an IV into my left arm and then one of them said something which I didn't hear. The last thing I remember is saying "tens?" and a funny chemical feeling passing up into my head, making me feel sick. I think I went under with my eyes still open because I don't remember closing them! I was also crying at this point because I was alone.
Two hours later I came round in Recovery and couldn't see out of the bandage around my forehead. I panicked and the nurse wouldn't let me move it so I could see what she was saying and I felt sick anyway so I promptly threw up all over the side of the bed and probably hit the nurse with it all! Whoops... They decided to move me back to my room about half past two and I wasn't looking forward to this because I couldn't control the movement and lo and behold I was sick again into a kidney shaped bowl on the way to my room which was only 150 yards away! They stabbed me in the leg/bottom to inject anti sickness medication (despite the fact I had an IV line in!!) and this didn't work and they gave me two little painkiller tablets which I promptly threw up! I said to mum (who's got an implant too, implanted nine years ago) "You didn't tell me it would hurt THIS much!" as I was in quite a bit of pain around the scar. I was sick many times over the course of 4 hours, finally regaining control of my stomach around 6pm. I slept after each throw up bout and the rest of the day was as follows sleep/wake up and talk briefly/sleep until everyone left about 8pm and I slept well for the first night.

The night before...

There's an hour and a half to go before I'm not allowed to eat anything until after my operation. I plan to go and drink a gallon of orange juice or something sweet and I'll savour it hee hee! I can't believe Thursday morning is coming around so fast but I'm glad the waiting is nearly over. I'm still employing my favourite tactic which is to not think about it at all and I'm fine. Tomorrow morning when I walk into the Nuffield I'll feel very different. I've told Ant to take some photos so I can put them on here afterwards :o) I can't think of anything else to write!
Well that's all for now folks.. watch this space!

Two weeks to go..

This time in two weeks I'll be sleeping off the anaesthetic in my own room in hospital.. The thought of that does not make me want to run for the hills like it did the day I filled out the health questionnaire. I had an appointment at Nuffield on the 5th July to have an MRSA swab and I met the nurse who will be on the ward on the 21st and she answered lots of questions that I had about the day. What I need to bring with me, what I can wear into the theatre (nothing but my own cotton knickers!! And a hosp gown of course..), why we have to go in so early at 7:15am (so that Mr Gray can walk around and see everyone he will operate on that day.) Whether anyone can stay overnight (I'll probably be on my own.. ooh err.) and so on and so on. For some reason this chat with the nurse has really allayed my fears and I'm now feeling a mixture of tiny bits of excitement, quite a lot of nervousness but also a curious anticipation! This may change, of course, so just watch this space... :o)