Right Back To The Very Start

So, this is my very first post on my blog.

I have never created one before but thought that now I have a big YES to have a cochlear implant I would keep a record of the very exciting journey I am about to begin.
Up to this point I have been keeping a diary from the day that I had my first assessment appointment and so I have decided to copy this in to my blog and backdate it to earlier in the year.

The reason I have decided to start this is because on going through my assessment, I have had lots of questions and wanted to know of other peoples C I experiences, and by reading other C I user's blogs, it has helped me a lot with making certain decisions along the way. By keeping my own blog, not only will it be somewhere to keep track of everything as it happens, and let my friends and family keep up with it all, but perhaps I may be able to help somebody in the future with a decision along part of their own C I journey.

Happy reading and lets go back to February of this year:

Saturday 20th Feb 2010

A bit concerned about finding the South of England Cochlear Implant Centre (SOECIC) building on Tuesday due to the vast number of buildings on the university campus where it is located, so Michael (my hubby) drove Dylan (my dog) and I there so we could look at parking and find building number 19 - it was actually not too complicated at all.
Lots of construction work going on and parking could be fun once the uni is open, but will be leaving at 9am to get there and park in plenty of time on the day - roll on Tuesday!
Sounds stupid, but was good to show Dylan where I will be going for all of this...Michael will obviously be spending a lot of time there with me too.

Tuesday 23rd Feb 2010

First appointment today for the whole assessment period. Picked up my mother-in-law (Jan) to come with me as Michael couldn't make it due to my appointment day being changed last minute and my parents are away in Cornwall. We set off at 9am as planned and typically got there really early and parked without problem as there is a coned off parking area for the SOECIC.
We went in and funnily enough we were the first people for the 10am appointment. Gradually others turned up and we got chatting to one guy, Paul and it turned out it was his first appointment too and would be in my introduction group, he lived locally as well.
Four of us were called for by Nikki, the hearing therapist and as well as myself there was also a much older lady, Editha and then a guy called James who I would say is around 10 years younger than me.
Nikki took us to another room and in the corner sat a lovely lady called Fiona and she was our typist, which was great as everything that was said would come up on a big screen at the front of the room so we could keep up with everything.
We were given an overview of what to expect throughout our assessment, who we would meet, info about the staff and some history about the SOECIC.
I was already feeling a little emotional to finally be there, so when Nikki started talking about expectations, I got a bit watery eyed, which she spotted - yikes!!
After this, she passed around the ear processors and the internal implant pieces from the four different manufacturers they use - they are from Australia, U.S.A, Austria and France.
I had taken a look at some websites before today and liked the look of the Cochlear Nucleus the best and when I was able to see it and feel it for real it confirmed my opinion.
I have been calling it my iEar as it is in white (optional) and it is the smallest and seemingly the most advanced of them all.
Of course though if this does all go ahead then I will speak with my surgeon in case there is any reason why I should not have this make of implant.
Then we had a chance to ask questions and this was a really interesting part. We found out that in an ideal scenario it would on average be 4-5 months from the assessment start through to the operation.
The whole meeting was a very, very beneficial start and I came away feeling very positive.
Jan said her head was buzzing with all of the information.
Some of the group went on for further appointments, but that was it for me for the day and I return on Thursday for 2 more. Hopefully the same people in the group will meet up again throughout the process.

Thursday 25th Feb 2010

A day of lots of tests and lots of questions. Michael was able to come with me this time and it was good for him to see where it is all happening, meet others being assessed and of course, meet the lovely members of the team too.
My first appointment was for hearing tests and after doing the usual kind of test I would have at the ENT, I then had to do further tests with speakers sending noises in to the room. Michael was there for this and was given a pair of headphones to wear as the sounds would be too loud for him, but he could still heard everything through the headphones, whereas I hardly heard a thing, without headphones!!
After this I had to do some lipreading tests and this was really hardwork, it was a totally expressionless guy reading out all sorts of sentences and I had to repeat back what he had said if I could make any of it out. Some I could repeat whole sentences, others, the odd word and for some nothing at all. Then another 24 sentences were shown, this time with sound and I had to do the same thing again.
My results showed that I got 25% just lipreading and 29% with the sound so only a 4% increase and this shows how much I totally depend on lipreading.
I also had a test (pressure) on my middle ear and this showed as absolutely normal, so at this point, Sarah the audiologist said that she felt that a C I would really benefit me - I was very good and didn't get watery eyes when she said that :-)

After all of the hearing tests, I then had a communications assessment appointment with Nikki and another lady who I think was called Claire. This is where loads of questions were asked about my hearing, what I had to do to cope, my experiences and the support I have had through my life with school, college, work and of course family and friends. I was also asked if I had noticed any difference in my speech since my hearing had deteriorated as much as it has.
Michael was also asked a lot of questions too.
Other things I was asked were things like how do I make appointments, wake myself up in the morning etc., what did I expect from getting a C I. What do I miss and what have I stopped doing - I mentioned concerts and also feeling very little confidence in social settings, especially when the people are unknown to me.
It was all good though and again, I left feeling very positive as Nikki also said the same as Sarah earlier and that it looked like I was going to be a suitable candidate for a C I.
I felt totally worn out after all this and went home and had a snooze and cuddle with the dog :-)

Monday 1st Mar 2010

Today was my meeting with Mr Hellier, who I know from my appointments at the ENT. It was a lot more questions, this time on the medical side of things, about my history, when I have tried aids etc. I was also given a lot of info about the op and what to expect. It is a 3 hour operation and I would probably have a one night stay and then be signed off work for at least 2 weeks...I shouldn't be in too much pain but I will be given anti-biotics and won't be allowed to drive for a little while. I was also told I wouldn't be able to run for at least 2 weeks, perhaps longer.....gulp!!! but to be expected I suppose as it is head surgery I need to recover from.
Mr Hellier also went through all of the risks associated with the operation, all very slight risks but they have to let you know, these include loss of balance, loss of taste and numbness on the side of your face, although if these do occur they do tend to go over a short amount of time.
Although everything is still very positive following this appointment, Mr Hellier did keep saying 'we need to say if you have the operation and not when,
It is still early days yet, but Mr Hellier has confirmed my way of thinking that all is good, but I have to remember that this may turn out to not be the answer for me, and this could be their decision or mine.

Tuesday 9th March

I had my pheumococcal vaccine against meningitis today at my local doctors. It did not hurt at all, although my arm may get sore later or I may feel groggy or feverish.
I also had my next batch of appointments through the post today so that is something to look forward to in a few weeks. This will be lots more hearing tests, a device info meeting and also a user group meeting where we meet other C I users who will talk to us about their experiences.

Wednesday 10th March

Ouch!! my arm is hurting so much and it feels like it has been kicked by a horse. It hurts where the injection went in, but also my entire upper arm, on to my shoulder and my armpit - it has a red ring mark around my arm too.
I have also felt tired today and generally feeling bleurgh and this led to me feeling pretty down as I left work and feeling sorry for myself, the first time since the assessment started....but I think I have to put this in to contrast of a very hectic week-end just gone where I ran lots, and I just don't like going from being so full of energy to feeling pathetic.
I came home to some paperwork and questionnaires from Hampshire C C and I guess this links in with the funding application, so I have completed everything and will be sending it off first thing in the morning - can't have any delay there!

Wednesday 24th March

Back to the SOECIC today for 2 appointments, both were hearing tests. The first session was a repeat of all those I had before to make sure there is a consistency, so it was the usual beeps test with the headphones on, then without and then with aids in one at a time. The results came back as before.
Then it was the lipreading video again with Mr Personality :-) Michael had to turn himself away this time so he wouldn't get the giggles! Results for this one were also very similar to last time 27% compared to 28%. After this one it was another speech test where some sentences are spoken out of a big speaker and I was to repeat them back, but for this one I couldn't even hear any sound, let alone what anyone was saying.
From here we then moved to another room for further tests and this was the one where I could just sit back and did not have to do anything, no buttons to press or words to repeat - lovely.
I did however have to have 3 wires stuck on my head and 2 in my ears! I must have looked quite a picture. This was a long test and they pick up the electricity of sound recognition in my brain (apparantly there is one in there ;-)). Nicky the audiologist was very lovely and patient and while she was preparing my skin for the wire pads to stick on, she said it is just like having a facial! I just had to sit back, close my eyes and let the machines do their thing. Nicky also said to me the results showed that a C I is looking to be suitable for me - fingers crossed.

Friday 26th March

A very, very good day today :-) It was really informative and I felt like I learnt a lot. Today I had Michael and my Mum with me.
The device meeting was first of all and this was a group session with Roberta - who like all of the staff at the SOECIC was very lovely and very easy to listen to and understand which was hugely assisted again by the speedy typing of Fiona to give us captions at the front of the room - a godsend!
Paul and James were in the group again, so it was good to see them, but there was no Editha, but another girl called Kim.
Roberta gave us a lot of information about each device and she passed every one around, the internal and external parts so we could have a feel and try them on if we wanted to. She was brilliant and answered all of our questions.
I am still very set on the Cochlear Nucleus one - the iEar !! It's proper name is the the CP810, sounds like something from Star Wars, which my godson will definitely approve of!
If my MRI scan goes well, I would then have my one-to-one with Nicky which would be my expectations meeting and choosing the device, so I will get to have a play around with them again which is good as although we could today, I was conscious of other people in the group waiting to look at them.

Afterwards, we had the user group meeting and I had really been looking forward to this one most. I had a long list of questions all ready, which Fiona laughed at and said she wanted to be out by 5 :-)
So, 2 ladies came in with Nikki, Sue and Lesley - Sue also had her husband with her which was great for Michael as it gave him chance to hear from his side of things (I got watery eyes when I wrote that the first time as I have been so lucky to have all of the love and support from him and everybody else).
Anyway.......Sue's background was that her deafness occurred suddenly 2.5 years ago after a fall - her implant was fitted 6 months ago. Lesley was quite similar to me really in that she started to lose her hearing around 20 years ago and it gradually got worse and worse, she admitted she had totally lost her confidence so it was great to see her sat there today talking to a group of us. Lesley had her implant 2.5 years ago.
So, after hearing their history, Nikki prompted a few questions and then we all started to ask things too. I won't list them all, but the main thing is they have both had amazing and positive experiences and do not regret having the implants at all. Lesley is obviously further along and she feels she has about 90% of her hearing back!!! 90% is amazing and Nikki reminded us all that we are all different and that the average is around 30%.
they are both so happy with their implants and they now feel they are part of them - they told us a few funny things happening like getting tangled up in the washing line, or having a 2p piece stick to the magnet when taken off at the hairdressers and not being able to understand why it wouldn't go back on. I came away feeling very, very positive and was so impressed that neither were using the captioning screen to keep up with the conversation, they were talking to and listening to us like 'normal'.
Myself, Paul, James and Kim swapped email addresses so we can all keep in touch along our own journeys. A great day!

Monday 12th April

MRI scan today - wasn't too bad. There was quite a bit of waiting around before going in to the scanner and so Michael and I played i-spy in a room that virtually had nothing in it, it really didn't pass the time that quickly! hehe!
Anyway, finally went through had to remove some bits and pieces...jewelery etc. Michael was coming in to the room with me and so he had to do the same.
So, in to the scanner I go and I was told it would take around 30 mins, which came as a bit of a surprise as both Kim & Paul had both said it takes 5 mins (turns out this is for the CT scan).
A frame was put over my face which felt odd and very close and then I was moved in to the tube. The frame had a mirror on it and I could see Michael, it looked like he was sat behind me although he was at my feet end. I was worried that being able to see him that it might give me the giggles but once I was in there it all felt very real and serious. I had to keep so still I couldn't even smile or anything. It felt like ages and even with some earphones on it was a very loud knocking noise and as it got faster it made me feel a bit weird.
when it was finished we could go, so now I just have to wait for the results to get sent to the SOECIC and then hopefully have my one-to-one appointment with Nikki. Pathetically, I felt really tired after my scan which I was not expecting at all.

Tuesday 13th April

I heard from Paul today as he had his one-to-one appointment with Nikki and had to choose his device ready for if he gets offered the implant. He has changed his mind about the Nucleus as he has been told about some glitches and has now decided on Advanced Bionics. This was disappointing to hear but I spoke to somebody who I have recently found at work who has been implanted and is about to be 'switched on' and he was told the same but still went ahead and chose Nucleus - I am keeping in touch with him (also called Paul) and have my fingers crossed for him and his switch on and that he helps me stick with my decision too.

Thursday 29th April

Back to the SOECIC today for the final part of my assessment. This is the expectations meeting with Nikki and choosing my device ready for if I get offered the implant.
Before we went in to the room with Nikki, I was given a questionnaire to complete and this had a lot of questions on it such as 'if I have an implant would I expect to understand the difference between a man and woman's voice', 'would I expect things to be loud or uncomfortable'....just lots of questions really about what I have in my head that a CI would give me. Nikki then went through all of these answers with me and said there were no right or wrong answers but it was to determine I am being realistic about the end result. I think with a couple I had a little less expectation than is normal eg. 'comfort of noise level'.
After this I then had to sit at the PC and answer a load more questions, grading them between 1-100 on what I would expect from the CI, these questions as an example were things like 'being able to understand speech one-to-one', being able to use the phone', talking in a group'. Again, no right or wrong answers and I found this one a little more difficult as on answering I wanted to keep realistic but of course, nobody knows what the success level would be for me personally.

Then it was time to let Nikki know which make and colour of CI I had chosen. I immediately chose the Nucleus one as always intended and this was based not only on size, look and comfort but also the success that Paul (from work) has had with his so far since switch on.

http://www.cochlear.com/au/nucleus-cochlear-implants/nucleus5

When I told Nikki my choice, there was no mention of any problems with it so hopefully any glitches in the past have been sorted out.
I went for the device in black. Before the meeting I was undecided between black or charcoal, but when I saw the charcoal cover in front of me I didn't like it and it was a lot paler than it looks in the book. I was then asked to chose which ear, and I chose my left. This is because I am left handed so will hopefully make it easier to put on, take off etc. but also when I walk or run beside people, I feel better having them on my left handside, this is just a physcological thing now but is from before when my hearing was slightly better in my left ear. Also, Nikki mentioned it is a good choice of ear for when I am in the car driving....I can't even begin to imagine being able to have conversations with people in the car while I am driving!
So - that is it now, just need to wait for the team to have their decision meeting and decide if they are going to offer me the implant or not. Nikki did not know when this would be.
As always, I came away feeling positive but realistic that this could still not happen, and if i'm honest, if it is a 'no', I will be very, very disappointed.

Friday 30th April

At about 2pm today, an email popped in to my inbox from Nikki - so, deep breath and I opened it and was SO pleased to first of all see the words 'good news'! I have been offered the implant!!!!
I immediately burst in to tears at the relief of it all and the fact that this was the start of another new road to my implant that is definitely going to happen :-))))))
Absolutely brilliant timing as well as Michael had popped home on his way back from work so not only was he the first person I could tell, but also I could do it face to face, and of course blubbed some more.
I then asked him to phone my Mum & Dad, as they had to be the next people to know before I went and shouted it to the world and when he got through, it was my Mum and he said 'Mel has got an email to read out to you'. I wasn't expecting him to do that and so I tried to read the email and was blubbing again and found it really hard to get the words out - what am I like!!
Then I asked him to phone Jan as well and she is really excited for me too.
Phew!! what an emotional few hours.....lots of texting and messages from work and everyone is so happy and pleased for me :-)))
Wow!! this is really going to happen now - what a start to the bank holiday week-end!
Nikki has said the op could be mid June, but with going standby it could be sooner, or of course later..