Decision Day - Getting a CI - by Eleanor

I realised yesterday that I hadn't kept up to date with the appointments. As you know, I have been to the assessments and was just waiting to find out if the team to decide if I was eligible to have one...

 On Tuesday last week I had an appointment to meet 'a member of the ENT team'. The end result is that they would like to offer me a Cochlear Implant. It was odd hearing those words, with the idea of actually having an operation seems unrealistic, as if it wouldn't happen to me. "You're on the waiting list now, it'll be up to 4 months" the consultant said, "It'll probably be me or my colleague operating so you might see me again". With that, I left the room armed with a consent form and a letter requesting me to get a pneumococcal meningitis injection for protection. I'd also been given another appointment entitled 'device information' for the following week.

 The 'device information' session was with a lovely rehabilitationist who is actually leaving soon so I probably won't meet her again. Nonetheless she was lovely and walked me through the possibility of colours and battery packs. I decided to go with the sandy beige because it actually goes with my hair quite nicely and I thought if I ever do want to stand out I can always pimp it up myself. With regards to battery packs, I could choose different sizes depending on how long you want it to last as they can be charged up via electricity as apposed to disposable batteries. The CI requires a lot of power which means generally either option doesn't last terribly long. They were only able to order two different batteries so I went with a disposable pack and a chargeable one with shoes on. "You can buy your own if you want anymore" she said, "they're only around £70-£100 each"...

 Then, a few days ago I was emailed with some surgery dates! What a surreal moment, from being prepared for a 4 month wait which is actually only going to be around 3 weeks wait instead. It was like being struck in the chest and you can't breathe because you know something strange (and potentially painful!) is going to happen. But a few seconds later a smile spreads across my face and I know, I know I'm ready for this new chapter. It's been so difficult, especially lately to keep hanging out with people, even people I know and love because I'm so tired all the time. I find myself doing everyday things and wondering what it will sound like with a CI. I found myself on a beach listening to the waves crashing against the pebbles at the weekend and I wondered what it will sound like with my CI. So long have I been astonished and astounded by young children with CIs, secretly jealous of their ability not to have to lipread all the time.. it may not work so well for me, who knows but I'm excited to see.

 After the operation I have been advised not to wear my HA in my operated ear, leaving me with just one HA for 6 weeks before the switch on. It will be a quiet christmas for me, but the more I talk about my concerns, the more my family seem keen to use BSL, even just the odd few signs, which I completely and utterly adore and appreciate. Thank you.

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..