Making friends with neurelec CI users

On my very first day i met some people who were going through all the same deafie frustrations which i did  - I found this so valuable and I thank SOCIEC for this  -  it really helped me. I also met Tayseer she was such a lovely natured gifted lady - shes studying architecture at university and was struggling with one of her ears. I was able to keep in touch - She was having a single implant. I was interested  to know how she was getting on. i wish her well and hope that she benefits from it as im sure she will embark highly in her career once graduated. Shes encouraged me alot and been very kind to me when ive felt down in the dumps abt my deafness so I am thankful shes been in my life.

I also made friends with another lady Margaret - she was a older than me but her deafness deteriorated very quickly later in life,  understandably she didn't have lipreading skills so i communicated via pen and pad during our sessions - she made me smile when she explained when her husband and her argue it starts in CAPITALS which got bigger and bigger the row became- ha ha. We kept updated by sms text. It was fab - she had a good sense of humour alike me and after having her operation in Southampton - for which she was hospitalised for 4 days! We arranged to meet up with her and her husband. We met on a gorgeous day  and i being nosey wanted to observe her scars under her scarf - it was really kind of her to allow me this priveledge. I must say i was very impressed the shaving was kept to bear minimal - and Mr pringle had done the most perfect sutures ive ever seen! The shaving on top of her head was tiny and the size of a finger tip - amazing stuff. Her only gripe was that she struggled to wear her glasses but otherwise the pain was ok -and encouraged me by saying 'if i can do it you certainly can!' She also mentioned a numbness in her tasting buds but otherwise she looked healthy and was excited abt her switch on. A few weeks later i received a text saying all was ok and her activation had been gd but everything sounded like MARS - very high pitched and on helium ha ha so im sure i will meet her soon once shes settled into rehabilitation

We made a pact that we would meet up after Margaret has been activated - so she could hear our voices as she hadn't heard us before - so I shall keep you updated when we meet up soon.

I look back on everything today and think how blessed I am to have made these friends and also made some new friends - Cherry - and Geoff along the way - they too are neurelec CI wearers.

PS i know i go on abt hair - but you have to be a female to understand, Margaret did advise me to have mine cut shorter - but  I love my long hair ! Im sure it will be ok - and will have a conversation with my consultant abt it - but like my husband says it will grow back !!( I think i need some Grass seed quick !)

Funding

My case went before a panel to decide if they would go for funding and in april 2011 i was told that they will apply to funding from the NHS - im not sure how it all works but i know they rarely refuse- I was informed a NICE policy the NHS have means they usually consent to the implant and procedure. I rang  them up after about 6 weeks as i hadnt heard anything - but a few days later i was jumping with glee when i recieved the email - At last it was going to finally happen and the - 'lets get on with it' impatience was starting  to disappear - but.. now i had to wait for a date and that was taking time. A single cochlear implant takes 3 hour, my operation was going to take 6 hours so I suspose i needed a longer slot which took time - it would be any hospital nearby so I placed myself on stand by - so if a slot became available i would be ready to go ! I know im crazy hahah but i dont have any holiday commitments or domestic worries so I was keen to get the ball rolling.

Ive actually had people say how brave i am to go ahead and also say gosh its a big thing having someone drill in your head - and asked if i was nervous but i really am not worried firstly I trust my surgeon and secondly if my peers can go through this process then i can too.

i actually said a prayer - thanked god for making this possible and also hoped he would guide me through this journey - after all if i didnt have faith in him i doubt i would be where i am today..

The implant and expectations Part two

I ran out of space but in my previous blog - Sorry guys!! this is why ive called it part two -  Now let me tell you the next part of my journey is soo exciting .. As I sat in the room  after completeing my expectations quiz- its something they do - discuss with you what to expect from the implant. i was told not to get my expectations high but this is what ive learnt so far : I will not hear perfectly when i begin my process as it takes a long while to listen again - especially when ive never heard before, i have to retrain my brain and also i may not identify sounds ive never heard before. Also one point i do want  to make is it - its not a cure for deafness - its just like a super AMAZING hearing aid that may improve things quite alot - instead of my hearing aids that I cannot hear much from. Hope this makes sense! any questions just ask me.

For the next part i was able to see the colours I could choose my processors to be in  wow - ive never seen so many to choose from in my lifetime! The company neurelec provided our centre with a vanity case that had a mirror in with loads of dummy processors with all the colours of the rainbow.  all my life Ive had boring old beige hearing aids. So it was Amazing i felt like i was shopping - 'hmm this colour NOO that colour? Yesss trendy, another colour - Not bad and on and on'.. ! You can also imagine my husbands face when i went 'cool i can get matching shoes, handbag to go with my device now!'. I've even heard someone chose the same colour as there car! How marvelous is that !

By then I had already pin pointed two devices that i liked and decided on the Nucleus 5 which was shown in white casing for a single implant that would go in one ear or the Neurelec for two ears which was embedded under the scalp to travel over to my second ear .
I tried them on both on my ears - and Neurelec come out tops!It was light to wear aswell - made me realise how heavy my post aural hearing aids were! As for colour - I chose Purple ! - I know a crazy moment- but hey 'im still deaf and im proud of it !' Sometimes people forget so i thought it might help make my disability much more visual when my hair was put up. I looked at my mother who came with me and she was delighted and very excited for me. Got  to wait for a decision from the panel now and for funding to be applied for. CANT WAIT - im soo excited !!!　
　
　

The Implant Part One

From the very start we were all shown the variety of  implants - they were quite small and light comparison to how i thought they would be - a  small magnet was embedded into silicon - very smart and sleek- a wire attached ended up curly and is inserted into the cochlear part of your ear- looked soo delicate and smart as you could see some of the tiny electrodes - which i assume stimulate my ear to help me hear sound.

There were 3 devices shown - we had a good nose at each one and were able pratice them on each others ears- handy guidelines and technical info were handed out showing how they all work. We also were not pressurized onto a particular device -what fasinated me was that some of them could be controlled by  a remote control, or had the adaptions for leads so i could plug in to a i pod! tv etc  - amazing stuff!.For a look at one of these devices check out this link its shows you the cochlear device aka Nucleus 5 http://www.cochlear.com/uk/node/4917

This one however is a single one for one ear - my second choice, but after much consideration my surgeon, audiologist and hearing therapist said i would also be suitable for a double so i chose the Neurelec - a double implant - and a very new device to the UK. Ive included a link for this below:http://www.neurelec.com/trouver_imppro.php?pdt=80&id=stereo&expandable=0c
 I know i m repeating myself but AMAZING STUFF EH? well i thought so - haha! If you scroll down the bottom the last picture shows a diagram of how the second wire lies under your scalp.A special thank you to Geoff Hutton you has given me a copy of his Xrays that show his head after his operation which was recently- I wish  him well and thank you him for his experiences- (by the way any requests for autographs will have to come via me - as i'll gladly be his agent ha- ha!)

XRAY TO BE PLACED SOON WHEN I WORK OUT TO REFORMAT WORD DOC lool

A special thank you to my followers!

I just wanted to thank you every one for your kind comments - haven't worked out yet how to respond on this blog thing - when i do it kicks me out - boooo!  - I've been hit down with a nasty stomach bug that's doing its rounds in Portsmouth UK so was flapping around last night in delight when i hit the 300 mark!!It certainly cheered me up! Wow, never thought I'd have this much interest -made some lovely CI friends as well - and to the ones who are at the same journey or merely interested. I hope its been some help my whole purpose to this blog is to educate - the Neurelec device appears to be quite new and when i was researching for information - i couldnt find much about it. As i progress further into this blog Im hoping that it will help us all

please email me if you have any thoughts or things you'd like me to add as i shall be sharing them at a later stage once Ive had my operation

Love you all xxxx deafie lisa xxxx

My first visit to the South of Englands Cochlear Implant Centre

I received a letter in November 10 that my funding had been allocated for a series of tests at Southampton's CI centre and they required me to attend in Dec 2010, based on the Southampton university campus - we were running late and got lost! but thanks to some friendly students i found my way and as i huffed and puffed into the reception we were all ushered to a conference room, the first words the hearing therapist said ' Welcome to SOECIC(South of England's Cochlear Implant Centre) - you've all managed to get here and find us - which is great and a huge start, as we know how difficult it can be to find us!'. I'm sure most of you are aware you have been referred to us to see if you are suitable for a C.I. ....', at this point i realised when i looked at everybody a pleasant surprise - it really was a  beginning and most importantly - i wasn't alone - they would be going through the same journey i was about to encounter.


We were allowed to see and feel the CI device during this session which I've never seen one properly before so it was great and i was amazed how so tiny and light they were - my mind also became very fixated with the new NEURELEC implant - this was the one that i had indeed read in the paper and I was being shown how it looked.
To end this session we were all given a pack of literature and information to read for homework-and if your anything like me - most deafies like to know everything ! and reading is a good way to do it!
  

The Tests
Over the period of the next few weeks i had a series of appointments and  tests to go through

To start with I had a discussion with a Hearing Therapists and  Speech Therapist who wanted to know all abt me - my deafness, my life and how it impacted me. She duly took down notes with  the help of my interpreter. I use speech at all times but ever since my deterioration i was struggling to lipread - so i taught myself to understand and sign British Sign Language. ( thankfully i had some knowledge).This helped me tremendously as i was getting so tired - the most a deaf person can lipread is 10 minutes with 80 percent guesswork. This was most helpful and made communication for me much more easier - i also didn't have to rely on my husband - it gave him a nice break!

I began a series of hearing tests after this stage - I'm not going to go on abt them all as each centre does them probably differently - but i do know i was absolutely shattered as mine were block booked into all day slots - I'm in paid employment which suited me.

Ive included a link of the type of tests i underwent for your interest : http://www.royalfree.org.uk/default.aspx?top_nav_id=1&sel_left_nav=25&tab_id=286

Some of the stages were intensive and repetitive but at each stage i was talked through it and reassured. I had to have a days rest after my all day assessments so if you do work and have blocked all days slots like me  - it may be wise to take a days rest afterwards - i was absolutely shattered!

My memories: doing a lipreading test - which involved watching a computer screen of a man - he was able to speak lots of sentences once activated . I was asked to repeat what i thought i heard even if it sounded like a mumble. To begin with i was wearing hearing aids and ended up interrupting with  fits of laughter doing a few 'mmm's and 'arrr's which of didn't make any sense all !.I repeated this process without my hearing aids and my husband accompanied me - he actually was amazed at what i did and didn't hear - it was a good experience for him - the interpreter even admitted she too had difficulty too understanding the man on screen when they switched the sound off ( they weren't allowed to show any expressions or tell me ) - I was scored on this test and i came out very poorly.

I also know i shocked my husband further when doing one of the hearing field tests without both hearing aids - one of the frequency's were so high - he was wearing ear defenders and the sound blasted his delicate ears- i nearly fell of his chair! Poor bloke! - I think i terrified him as afterwards he sat in with the audiologist - who kindly explained every level i was listening at. I was afterwards quite pleased I did these tests - i don't think i really fully admitted and realised how bad my loss had become - no one had found the time before to explain my deafness to me properly - so SOECIC were really fantastic with this.

I met some people who were having the tests with me -some of whom i was able to swap numbers and emails with and  SOCIEC arranged a session for me to meet some CI wearers - this experience was interesting - my mother attended with me as my husband was unable to attend this time and she and I bombarded them with questions - it really did help me and gave me confidence to think abt the the type of things /advice and information  they gave us.



MRI/CAT SCAN
Once these results were gathered together the audiologist then proceeded to book me in for a CAT and MRI scan - Ive never had one of these before so i was a little apprehensive what to expect - it was ok but you were strapped in so - i just closed my eyes and thought of something nice whilst the machine was whirling around my head. I think i was more worried abt my results - as no one really ever concluded properly how and why i was deaf. To date they said it was congenital but i was interested to see if i had any deformities.  A few weeks later Mr Pringle my consultant confirmed that all was ok( relief!) and i was suitable for a implant - one of my concerns was that i suffer with reoccurring infections in my right ear, he reassured me that having a CI would mean i wouldn't have to wear an ear mould and my ear would probably feel much better - he would then refer my case to a panel of SOCIEC's professions.

Vaccination

It was also advised that as the operation procedure was so close to my brain there could be a very small risk i could get meningitis's so as a precaution they ensured every candidate was vaccinated. I was actually written to quite promptly by my GP advising me to attend for my vaccination - but at this point the surgery made a mistake and administered the wrong strand of meningitis so i had to go back and have the correct jab! But it was all fine in the end- i had a bit of a sore arm and temperature but otherwise there was nothing to worry about.

Although it was really an intensive couple of weeks, and a lot of information to take it - i found myself wanting to be part of this CI world. Best of all instead of being sad abt being deaf I was actually excited that i had been given this opportunity. 

How it all started ?

If you've been reading the start of my blog you will see that my interest began from a leaflet that i was given at the hospital - it had a really cool diagram on it with the ear and the device showing - and seeing that made me realise how tiny technology has become. Here's a copy of a similar one - if you focus on the grey wire thingy you will see where it is implanted :

I can remember a fellow peer of mine who went to Ovingdean with me having  it done and although it was new - i think there was alot of uncertainly to how it would work. To be honest though my loss wasn't that bad at this stage in my life - but i was really pleased for her and it did make a huge difference to her life. I can remember visiting her at home and her speech had improved dramatically since our school days so I was in awe of how well she was doing.I suppose this was my first encounter of someone who had a CI and i did hear of many more story's, being children mainly - some of them i heard didn't work so well or some of which did work but the child disliked. The emphasis at the time in the UK was huge and became common practice to implant children as young as they could which would assist them with speech and to prepare them for the big world.

On referral to see a specialist for another problem I've been having which was was identified as Vestibular migranos - it was duly noted that I was still showing deterioration in my hearing loss and I also mentioned how bad my tinnitus was getting  too. The vestibular specialist Mr Peter West took one look at my file and then said ' have you thought about having a Cochlear implant?' I looked at him and said ' the audiologist did mention this to me but I've always been told that my loss wasn't bad enough for them to consider ?' his response was ' Lisa you are looking suitable - i would say its at the stage we would consider you for one - I'll refer you to Mr Pringle for him to see you'.

In between this stage I had a chat to my friends and family - in the past I'd been dead set against them - this was because i was probably afraid , its a big operation drilling into your head isn't it? but i was reunited with some old peers from ovingdean - one was about to go through this experience and the other was already implanted and they too discussed with me their situation and options.

Here's a photo of my old school pals Nicky and Ben - they both had single implants- its been great catching up with them



My main worry was that I was deaf - i didn't want to loose my identity but I spoke to a close family friend whose child was implanted at a young age and she described although it didn't fully work for her son, that times had changed and she didn't regret it one bit - he was still able to get some sounds from the processor he wore and to ignore the rumours and pressure from the deaf community as they didn't know what they were missing out on. She had grown up in the deaf world as a CODA ( child of a deaf adult ) and deafness is in her genes - hence her having two deaf children and probably understood my concerns. Technology had improved so much since she had him implanted and she was even considering on getting his second ear done so he could gain much more, She also did say that it wasn't a cure to deafness but it was far better than wearing the post aural aids that the NHS ( National Health Service ) provided us with.

One month later i was waiting in the Ear Nose and throat Department to see Mr Pringle - he looked extremely busy and popular that day - but as soon as i sat down with him and discussed my history, the reoccurring infections i got from wearing ear moulds, my tiredness, my depression, - he took one look at me and said ' Have a think about it - you are hitting all criteria and I really think you'd be a good candidate'
and informed me that they had  to apply for funding for me to attend the CI centre which was based in Southampton. I would then be under the centre care for which he is on the panel for and the specialists at the centre would support me whilst undergoing more intensive tests and assessments to look at my suitability.


I looked at my Mother who attended with me and she smiled - she then said to me afterwards ' What made you change your mind? i said well times have changed and i've had to start too face the facts now - Im not coping with being profoundly deaf no more so if they can help me then its a bonus '

My hearing loss

The history of my hearing loss was pretty stable before 3 to 4 years ago and I suppose i considered myself to be much more hearing impaired than actually deaf - but now there was no doubt about it I was Profoundly Deaf and that was a big impact on me, also for my family peers and everyone who are around me.

I was born deaf - but no one will ever know how or why as i was diagnosed so late ( there's a story abt that which i will share with you one day!)- at this start in life my loss then was moderate to severe and began my pre-school years learning speech.. I have a hearing family and there is no genetic history of deafness - so i suppose it seemed natural that i would use my speech. I thank my parents for the determination of encouraging me to speak as i do still hear compliments. Ive pretty much experienced  the throes of mainstreaming and also went to Ovingdean hall school in Brighton for  the hearing impaired in the 80s -90s. For much of this time i was wearing post aural hearing aids, although i do remember the old phonak hearing aid boxes i used to have to wear at infant stage and also for my class sessions at school  hahah I've enclosed a picture of me wearing one at the age of 6 - i also was lucky to meet prince Charles when i was at preschool age - he was quite interested to hear how well the phonak worked for us deafies - running around  the playground wearing one of those was no fun when your chin was hacked to pieces- I can still remember the weight of them too ! lol

Being at ovingdean hall school  meant i got the best out of what residential hearing and also helped me develop skills to cope with my hearing loss such as lipreading - snippets of sign language( it was an oral school but we still communicated amongst us in sign when we could get away with it !!) I was quite a confident person then and even began to play a flute quite fluently through the vibrations and sounds i already had. Things began to start changing though -6 years ago they discovered that my moderate/severe loss was no more and i was becoming much more along the lines of severe to profound.

When they changed my aids from analogue to digital i also struggled too and although they changed and re tuned me my family was beginning to notice a difference in me. It wasnt untill 3 - 4 years ago that they realised that there was a deteriation and i was now classed as profoundly deaf.


My confidence was beginning to crash which changed me as an individual - I couldnt hear behind me, started shouting instead of talking - due to inability to hearing tones, people were ramming there trolleys behind me when i was visiting the supermarket ( i think that was when supermarket rage began!!)it was my biggest horror as they never could see my deafness! My husband was having to be my soul carer as he did all my phone calling, repeating what was said. Going places like swimming, cinemas, socialising and restuarants he was with me at all times as i couldnt hear the dangers around me. I didnt feel confident going out alone.

I also struggled in the workplace and changed roles from customer facing role to an administraton role which required less of the use of the phone  - i was using a BSL interpreter ( british sign language interpreter) and for every time i mis-understood - the paper and pad became my best friend! 

The biggest thing throughout all this was that i was beginning  to get depressed and soo soo tired with all the constant watching and being alert all day it was really taking a toll on my well being.

The future changes and so does time!

About a year ago I remember reading my local newspaper and came across an article about a lady who had been the first person in the UK who had a new type of cochlear implant - on reading this article I was amazed that technology had indeed changed a lot since I first heard about them. The way they described this device was that it was linked to two ears by one wire /magnet and although she had been deaf all her life she was doing well with her rehabilitation. My thoughts about this at this time was that I was intrigued and also fascinated how it worked. I never gave myself much thought to think that I would be about to encounter such an experience, but as the future changes and so does time.