Auditory Implant Service

“I really wouldn’t change a moment since making that first move to have the implant fitted”

Jo Deacon – My Cochlear Implant Story

Cochlear Implant Patient Jo19th October 2013 will mark the third anniversary of my cochlear implant.  Even now I’m still hearing new sounds and understanding and speech recognition is improving every day.  I still can’t believe how lucky I am and if there’s one thing I regret is was that I didn’t have it done sooner! I guess having the cochlear implant isn’t for everyone and is a personal choice but I have to say I’ve been a huge advocate for it and tell everyone I know that I have one and the huge benefits I’ve had.

My journey began after visiting the Royal Surrey Country Hospital in Guildford in May 2010.  I was given the choice of which centre to attend and chose to go to the South of England Cochlear Implant Centre.  Not wanting to face the traffic of London and preferring the more scenic journey to Southampton it wasn’t a choice I regretted! The journey was effortless and took just over an hour.  It’s been achieved in all weathers and the worse was heavy snow! This was post op appointment I had and I was really keen to keep up with the appointments and wasn’t letting the snow beat me to make one of my tuning appointments! I soon discovered the staffs are lovely there and anytime I had a query or needed to change an appointment they couldn’t have been more helpful.

My choice to have a cochlear implant came after a friend of mine had a cochlear implant and it wasn’t until my youngest was older that I finally found out more and got the ball rolling.  My youngest child had just been born when it was originally put to me but I felt that it wasn’t the right time and waiting until she turned six.  It happened rather quickly and looking back on it was the best thing to happen.  I chose to have an Advanced Bionics implant and though it wasn’t my first choice initially I decided to go for the comfort of the fitting rather than how it looked!

I met my consultant in June 2010 and the first things I asked him was how many operations he had done, the success of the operations and if he had steady hands!  I also met audiologists who carried out the assessments and the numerous tests and thankfully all seemed positive! After attending several more appointments in July at SOECIC I then had a CT and MRI scan in August which again thankfully came back positive.  I guess one of the best things about being profoundly deaf was I couldn’t hear all the noises of the machine (which I had been warned was rather noisy and may not like it!) – in fact it was rather the opposite! I was offered some ear defenders which I declined because I couldn’t hear a thing anyway! I also had some expectations counselling which I have to say really did make me think about my choice to have a cochlear implant and the impact of the procedure.  It brought together everything from the assessment, meeting other people who had had an implant, etc.  It made me realise that I had to be realistic about my expectations and take each day as it comes and let it come naturally rather than getting my hopes up and just being realistic.  After all I’ve been deaf since birth and I’d never heard like a ‘normal’ hearing person.  Even ‘normal’ hearing people don’t hear everything, so why should cochlear implantees even after 5 years hear everything?

Anyway I received an email in September asking me if I wanted the cochlear implant in October! I was honestly shocked and amazed at the speed of it all! To be truthful I was offered I believe a cancelled slot hence I was so fortunate to be able to have the implant.

Now I should say I had long hair, and naturally being a woman I was worried about having some of my lovely hair shaved off but looking back on it really wasn’t noticeable at all.   After a bit of a wait I was taken to surgery, feeling very anxious understandably! I don’t even remember being going under as the team were so good and I didn’t get a chance to even think or worry about it anymore.  After spending some time in recovery I spent my first rather unsettled night on the ward and spent most of the next day sleeping.  I did feel very nauseous and had rather a sore throat but the miracles of medicine allowed me to feel better by the second day post op.  I had to have a head x-ray to make sure things looked ok, which luckily they did and thankfully after two days I was allowed to go home.  Strangely I don’t remember much of the journey but then I slept a lot on the way home.  I must admit we were worried about the journey after the op but I can honestly say it was nothing in comparison to what we thought it was going to be! I arrived home to see the children and the first thing they said was you smell funny (hospital smells!).  It was lovely to be home and I was greeted with lots of lovely cards and flowers and had a steady flow of visitors.  Under strict instructions I rested and attended all the post op appointments.  The big switch on was 8 weeks after the day I was implanted and to be truthful it wasn’t the big thing I thought it was going to be and was rather disappointed! In truthfulness though I do remember thinking back to the expectations counselling and gave myself some weeks to get used to all the tunings and even three years on I’m still learning.  I guess the expectations counselling has done its job and I look back on the comments made by other cochlear implantees and the staff at the SOECIC and now realise that this is a long term and on-going thing.  It’s not something that is done in a day/week/month or year.  It’s year’s worth of learning all over again.

To sum it all up, I don’t regret it.  I’m very very grateful to be able to have had the implant fitted.  I will always be very very grateful to all those involved including the staff at the RSCH, SOECIC, the Southampton Hospital where I had my hospital (the NHS really are amazing!) and most of all my family and friends with whom I could not have done this without.  On a very personal note, the one person who has been there constantly throughout all of this journey is my husband Paul.  On my worse days he was there to pick me up and give me the positivity I needed and on my best days he was there to share the new and great things.  He was with me at all my appointments pre op, during the op and after the op and he’s certainly honouring his wedding vows! I took my closest family and friends and even my two children to some of the appointments after the op to have the tuning so they too could feel involved and it was lovely to share those moments with them.  Sadly my parents didn’t get to see me with the cochlear implant and that’s the only regret I have.  After spending years living with the best hearing aids the NHS could offer at the time, the cochlear implant is a totally different world of sounds.  Birds are noisy, the children are louder than I remember and not being able to find the origin of some sounds drives me nutty as I can hear them but can’t see them! The sound of crisp packets being scrunched up, boxes being clicked open and shut and cutlery grating on the plates grind on my nerves!

As a child-minder I work with children everyday and whilst I could hear with the hearing aids I had pre implant, the quality of the sounds after the implant was such an amazing difference.  Being able to hear them in a different way is very rewarding and even hearing them make sounds of dinosaurs roaring and the delight of hearing them screaming and laughing when they play is an absolute joy.  Admittedly there are some days that not wearing the implant is a relief (and is an advantage!) as it does get a bit much as having to tell the children to keep it down which I think is unfair!  I’m able to use the telephone with people I know and keeping the conversation to a minimum (after all I’m still learning and I need to let my confidence grow!).  I still sound ‘deaf’ and I’ve been told my speech is clearer but I’m quieter.  No more whistling from those NHS hearing aids and no being told I’m shouting as I couldn’t hear myself well.

I turned 40 last January and decided to have all my lovely long hair cut off! All that worry pre op about losing my hair and I decided to go for it! So turning 40, a new hairdo and the on-going learning, the implant was really doing its job.  I had attended the SOECIC for some follow up appointments post op and speech discrimination scores had improved (and still are!).   Going from 0% speech recognition to 39% after two years truly was a positive sign.  I really wouldn’t change a moment since making that first move to have the implant fitted and am looking forwards to seeing what happens next.

To all those that are thinking about having a cochlear implant, making the first move is the beginning of the rest of your life.