The eve of the operation

Another really lame title—I’ll try harder in future!

Well, after starting the assessment process with Guys and St Thomas’s hospital back in December last year, the time has finally arrived for me to have my first implant. Normal practice seems to be to implant your worst ear, so that in the unlikely event that something goes wrong, you still have the hearing from your good ear to work with. I’m having my right ear done—which is my worst ear—though to be honest, there isn’t really much in it. Because I’m blind, I’m entitled to be offered bilateral implants (implants in both ears) and, as soon as I’m confidently using the first implant I’ll be asking to go back on the list to have the second ear implanted.

Over the past few weeks, loads of people have been asking a variant of the question “are you nervous?” Well, the answer is not until recently but over the last week or so I’ve suddenly realised that ‘this is it’ and that there is no going back to hearing aids if it doesn’t work out. I’ve also been thinking about the fact that as of Friday, I’ll have a thing in my head… eek!
The thing we are most worried about in terms of the actual operation and the night following it spent in hospital, is the communication issue. As I’m only having one implant at this stage, I will still be able to use my other hearing aid—though, on its own, this won’t be much help to me, especially with the unfamiliar voices of the hospital staff. We raised this with the nurse at the pre -op appointment. Slight pause and nervous look followed… Clearly they hadn’t thought of this… My wife, Victoria, being a kind-hearted soul, decided to put the poor woman out of her misery and made a couple of suggestions, all of which were pounced upon like a drowning man grabbing a life raft! Victoria suggested that we could create a poster that would have certain likely phrases on them, such as ‘are you in pain?’ ‘do you need the toilet’ etc. Below these we would stick a braille label, which the medical staff could put my finger on so I would know what they were trying to say. Victoria has made the posters so I’ll attach a picture of this sheet to this blog post. The pre-op nurse also suggested that they might want Victoria to stay with me, right up until they put me to sleep and also to be in recovery when I wake up. Then if needs be, she can use deaf/blind manual to communicate with me. They was also talk of the hospital staff asking Victoria to stay in the hospital overnight which, while very reassuring for me would probably be very uncomfortable for her! We very much hope that this will happen. It has started to be the thing that we are most nervous about.
I have to arrive at the hospital for 7 am tomorrow morning so I can have the privilege of sitting around while they sort themselves out! No idea what time my actual operation will be, though my audiologist mentioned a few weeks ago that they weren’t doing any other implants that day, so hopefully I’ll go in to theatre sooner rather than later. I’m hoping to be back home on Saturday afternoon so I’ll report back then (or at least when after I’ve checked the football scores).

Bye for now. 

More about my hearing loss

Blog title:
More about my hearing loss.

Apologies for the unimaginative title, I didn’t sleep very well so the creative juices aren’t really flowing today!

I thought I’d write briefly about my hearing loss to give you a bit of context as to how we got to this point. As I mentioned in my first post I was born blind but my hearing loss has developed over time. It wasn’t really noticed until about the age of 12 when my school noted that I was having some difficulty hearing the teachers. My mum mentioned that I used to have my music on loud at home—though I thought this was something that all 12 year olds did! At this time, I was given a hearing aid for my right ear and, about a year later, one for my left ear. Things stayed the same after this for the next few years. After leaving school in 2002, I spent the next few years drinking too much, sleeping late and generally avoiding real life (also known as attending university). At university, I really started to notice my hearing loss—in large lecture theatres I was unable to hear the lecturers, and group work in seminars was difficult. I managed to muddle along for a couple of years until I was lucky enough to receive a free Phonak Smartlink Plus. The mother of my then girlfriend worked as an audiology lecturer for a large university, and had connections with the major hearing aid manufacturers and managed to get them to give me this wonderful FM transmitter. This made a massive difference to me—I could sit anywhere and, if the person talking was wearing the transmitter hear every word they said wherever they were in the room! I could plug it in to the tv/radio/my computer and not disturb other people when I listened to things. After university, I worked for several years in an open plan office environment, with adaptations such as JAWS screen reading software and a Braille display. I also had a personal assistant. During this time, my hearing seriously deteriorated, and I started to have some severe difficulties such as:
 Social situations involving big groups or noisy locations (restaurants, pubs, parties)
 TV
 Audiobooks
 Screen reading software (JAWS)
 Accents

This narrowed my world considerably and I had great difficulty in coming to terms with the change. I did get used to it eventually, but often thought back fondly to when I could listen to an audiobook for several hours without straining to hear and becoming exhausted. Those were the days!

I also struggled with episodes of “sudden hearing loss” which were misdiagnosed as sinus problems. These episodes would last several days before improving and meant that I could only really read my Braille books during that time. Later on I found out that these sudden losses are fairly common amongst Norrie’s men.

So- that was my situation when I first started to enquire about the possibility of a cochlear implant.
At the time, I was living in Wales and attending a hospital that I won’t name and shame! They assessed me by giving me a sentence test in quiet and then told me then and there that I didn’t meet NICE guidelines. (NICE guidlines can be found here if you are interested: http://www.nice.org.uk/nicemedia/pdf/ta166guidancev2.pdf ) I was surprised but, as they were the experts, I didn’t query it. Everyone I mentioned this too WAS surprised, including other audiologists!

When I moved to England to get married, I requested a referral to Guy’s and St.Thomas’ hospital, as I had heard that they were among the best. I just wanted a second opinion, as I didn’t trust what I had been told before. My experience with G and St.T was fantastic. They were so thorough, taking a detailed history, looking through all my notes, enquiring about Norrie’s Disease, followed by hearing tests in quiet, then in noise, scans (MRI and CT) and so on and so on. They also took full account of the fact that I am blind. This process took 6 months (a little longer than the 15 minutes in the hospital that shall not be named!) Finally in July of this year I was told by the consultant that I was eligible! The audiologist explained to me that even though there had been no change in my hearing since I was tested in “you know where”, I was in fact eligible, especially as I was deaf blind.

So here we are. My op is the day after tomorrow. I will be blogging my experiences as I go along in the hope that t will be informative to anyone going down this road, especially those that are deaf blind.
I hope you’ll stick with me!

Pleased to meet you

Firstly, thank you for taking the time to read my ramblings (or blog as they call it these days). I thought that I would put this blog together for a number of reasons. Firstly, I hope it will be useful to other people (particularly deaf/blind people) who are either going through the cochlear implant process or are thinking about it and wondering what is involved. When I was undergoing my assessment I was interested in reading about other people’s experiences and, while there were quite a number of blogs from people who had received an implant, I couldn’t find anything from a deaf/blind perspective with the added issues this entails.

My second reason for writing this blog is really for my own benefit. The implant is going to bring about huge changes in my life and this will be a good way of getting my thoughts in order and also seeing how much (or little ha ha) progress I’ve made. So much will be going on that it can become easy to forget little things so the blog will act as a reminder.

So, a little about me. I always find sections like this hard to write as it reminds me of writing internet dating profiles! Next I’ll be telling you I like walks in the country, good food and fine wines! Or maybe not…

I’m a young (ish) man living in the south of England with my wife and my kindle. We got married earlier this year (me and my wife, I didn’t marry the kindle) and we’ve recently moved into our first house. My wife will post the occasional guest blog post, either when I’m feeling too lazy to post one myself, or when she wants to give a partner’s perspective on things.

I have been blind since birth due to a rare genetic condition called Norrie’s Disease. Here comes the Science bit! It’s an x-recessive genetic condition. This means that it is passed down from mothers to sons. The condition has a 50 chance of manifesting in sons and 50/50 of making carrier daughters. I have an uncle and a cousin with the condition, but I also have a male cousin and an uncle without the condition. If me and my wife have children, we would have either a boy with no sign of the condition or a carrier girl. Phew! That was a lot to take in wasn’t it?

Norrie’s causes blindness, usually from birth or shortly afterwards, often followed later by a degenerative hearing loss. Many Norrie’s boys also suffer cognitive delays and behavioural problems. It manifests differently in each family, and even within families. My family doesn’t have any incidences of cognitive delay, but we do have quite severe hearing losses.
Well, that’s it for my first post! I will post again this week to explain a little bit about the assessment process that I have been through. Please feel free to make comments (nothing too rude- my mum might be reading!).