The Journey To Getting a CI Part 2 By Eleanor

. On Monday just gone I went back to the CI assessment centre for the second time, after being told that based on my audiological results I am eligible for a CI. This time I went for three assessments which were to find out if I'm 'medically fit' to have one.. after making a very sensible (but slightly regrettable at times) decision to get the train and take my bike (which actually saved me a lot of money in car parking and buses) it turned out to be a rather long day.

 With my recent obsession in trying to keep fit in preparation for a half marathon coming up, I decided to bike to the train station. It actually went rather smoothly, until I got to the train station. Apparently people do not like bikes on trains and apparently it makes people rather grumpy, usually accompanied by a roll of the eyes or a tut as they bump into my rear bike wheel as it blocks the aisle entrance. It is also not a good idea to have a bike during peak times. On the journey home I unfortunately had to miss the first train back as lots of tall bikeless people prioritized their journeys before short people with bikes. It didn't bother me too much as I'm rather a patient person but I made sure I was at the front of the queue for the next train, whilst wondering if I could dump the bike and jump on the train if it was too full. All in all, it was a very successful journey and the train station is not far from the hospital at all, perhaps a 10 minute bike ride with excellent cycle paths which make you feel queen of the roads.

 The first assessment was the 'medical'. This was a very short 5 minute conversation with a nurse to check my medical history, if I had been in hospital before, whether I'd had an operation before, whether I was on any medication etc. They also got a lovely swab of my nose which I was told is to test for MRSA. Then, the nurse asked me if I'd had a CT scan of my head before, to which I replied no, so I was sent upstairs to have a CT (how exciting!).

 I'd never had a CT scan before, so it was a rather unnerving experience. You are asked to lie down on, what is best described as a bed but with an appearance of a table. For the CT machine, you're not really allowed any metal things however I'd casually, as most mornings nowadays, did my french braid in my hair that morning complete with frantic metal clips to try and stop it all falling out... so of course they had to come out....afterwards I looked very much like I'd just got out of bed.. so casual. Off came the glasses and the hearing aids, honestly, who knew I had so many things on my head these days.
 Anyway, after a few minutes of lying on the jerky table which couldn't decide if I was coming or going and feeling rather sick from the spinning equipment going around and around my head... it was done. Sadly I didn't get to see the scan of my head which was rather disappointing but I was informed that it was all fine upon inspection.

 There was lots of waiting around between assessments so I decided to find places to hang out and it turns out this hospital has a brilliant food court or 'concourse' as they called it, no idea why. This was great for the waiting around and I had no problems with boredom or hangry feelings.

The second assessment was the 'rehabilitation'. This was a chat with a hearing rehabilitation person, or Speech and Language Teacher (SALT). She was really lovely and keen to know why I wanted a CI, what my motivation behind it is. The process is rather lengthy, for example after the operation I will only have access to one Hearing Aid (HA) on the ear that hasn't been operated on, it will be rather quiet for six weeks until the switch on. For the first few months of the switch on, they recommend not to wear a HA in the other ear, so the brain can adjust to how everything sounds and get used to the different noises. This will mean, whilst they're programming the CI processor, further weeks of 'quiet'. She was keen to inform me that it will be difficult, hard work and a long process. This wasn't to put me off, but to make sure that this is something I really wanted.

 This often plays in my thoughts. Do I really want a CI or am I just looking for some miracle cure that doesn't exist? Being a Teacher of the Deaf and being as fiercely independent as I am, has made me want to do it all myself. I want to be able to hear the children read word for word, to hear their attempts at phonics, to hear when one of them is calling me or talking about their mum's birthday party at the weekend. But most of all, I want to hear my own children. I'm not saying I definitely will have children of my own but perhaps, if one day that happens, I'd like the option. 
 However, I have to be cautious here. I am deaf, and I do like to engage in the deaf community, I can sign and I love meeting deaf people. Wanting a CI doesn't mean I'll turn my back on this, definitely not. I am still me and I will always be deaf. 

The third assessment was 'objective'. This one consisted of a 30 minute nap! This was basically an ABR or Auditory Brainstem Response assessment, which measures the reactions of the nervous system to sounds. I was asked to lie on another bed *cough table cough* with some various 'electrodes' stuck to my forehead, behind both ears and one on my collarbone. Earphones are also put in your ears to play sounds, although I didn't hear anything so it might have all been a lie... For this test you have to be completely relaxed, so it is recommended you sleep or at least shut your eyes for 30-45 minutes. It is a bit surreal attempting to 'nap' whilst knowing someone is in the room next to you and admittedly I didn't really 'nap' I just shut my eyes and tried so hard not to breathe so loudly because the minute you know you have to be quiet is when everything you do is SUPER loud.

 That was the end of the assessments and I was free to go home. The next stage is that all the professionals I've seen are going to meet up and discuss my case and whether they would offer me a CI. So I am basically just waiting for an appointment with the consultant who will let me know the verdict.. hopefully it won't be too long a wait.

 I am ready to be offered one, I think this is a journey I'd like to undertake, but I don't think I'm ready to be not offered one....not when I've come this far.

Watch this space..

The journey to getting a Cochlear Implant (CI) by Eleanor

To Cochlear Implant, or not to Cochlear Implant.....


 Making the choice is the first step. Did I really want a CI? Would it actually improve my life? Would it really be worth the constant appointments? What are the chances it could go terribly wrong and I'd end up with no hearing? What about the six weeks before switch on, could I really cope with no hearing? Would I have to hide away like a hermit, frustrated at what a hearing world we live in?

(For adults, you are only allowed one CI unless you are vision impaired. You are able to wear HAs whilst waiting for the switch on. This was just my irrational thoughts.. going irrational).

 The truth is, this hearing world is not going anywhere. And my hearing isn't getting better by itself. Instead I'm often sat at the end of the day wondering where I will find the energy to listen again tomorrow. Wishing everyone would be quiet, that I could walk around the house without my hearing aids in and ignore the world.. at least for a few hours. Why does everything require listening?

 So, eventually, and I had to do it on my own, I decided to take the step and at least go for an initial consultation to see if I was actually eligible to have a CI. Some of you may know that a few years ago I went to an initial consultation and was told that my speech discrimination was too good. I was too good at finding the bits I could hear and filling in all the rest, because, basically that is what I do everyday, all day. These days, it feels such a slog. It feels different, harder somehow, but mostly it feels more frustrating.

 Today was the day of the initial consultation (for the second time) and I was sent to an audiology assessment. Basically they look for two things to see whether you 'meet the criteria' to have a CI.

 The first being that you must have a profound loss at particular frequencies (your audiologist will know more, it can also differentiate between CI centres). I already knew I met this criteria from the previous consultation and talks with my Audiologist.

The second is that your speech discrimination should be lower than 50%. If it is higher than this (which I found the first time I went) they believe that giving you a CI would not give you any more advantage than what you currently have and therefore would not be worth the risks of going through the process.
 The speech discrimination is measured by placing you in front of a speaker. The audiologist sets a tape to play, first of a male voice, who is saying sentences. You simply repeat back what you've heard, not what you've worked out. Then, a female voice plays. Then you take alternative hearing aids out. My results were pretty shocking with both ears getting just 14%, my left just 7% and my right a mere 4%. During the test I was reminded how much I hate watching the TV without subtitles. I literally get nothing and it feels like the most boring thing in the world. It's the same for pub quizzes by the way, if you happen to be reading this bruv - it's just torture.

That is basically the initial consultation. At the end of this, you are told whether, based on your results you'd be eligible for CI. The next stage is to have medical assessments and a whole host of other assessments. You can usually get all of these appointments on the same day but in this one off example, mine have been booked for different days. But, in a way I'm glad. It has given me more time to process my thoughts and look to the future. A CI isn't a cure, I know that much, but I do know it will give me a fighting chance of hearing, of letting me listen without staring intensely at your lips, without having to feel embarrassed about declining meeting up with friends because frankly I'm just too tired to look.

 There are many sides to the argument of CIs. Some believe that deafness is not an illness, that it isn't a problem to be fixed, that we should be proud of our culture. Others believe that CIs mean better access to speech, an opportunity to listen and to be heard in our predominately hearing world that we live in. As a Teacher of the Deaf myself, I completely understand both views. From a personal point of view, this is the decision I have to make for myself, that would best fit my needs. I'm glad I've waited this long because it has been my choice to make (I've had a progressive loss since the age of three) and I'm excited for what it could mean. I know there are risks of course I do, and I still have to pass all the other medical assessments and await for a group of professionals to discuss whether they want to do the operation before any of this can happen, but I'm in the journey.

I'll be going back in a few weeks for the medical assessment, the rehabilitation assessment and the objectives assessment, thankfully all on the same day... I'll be sure to fill you in on the next stage :).