The Switch On

Well its official, I’m a fully switched on CI cyborg. So here is what happened in a little detail

After waiting in the most packed/hottest waiting room in all of Birmingham we were called in to the audiologists room for the first appointment (I was with my parents who well “insisted” on coming 😉).

A few standard questions like how are you and are you well, checking my op scar and it was time to actually use this thing. First off was listening to beeps, 2 beeps of different pitches, after that more listening to beeps, but louder and louder ones until it gets uncomfortable. I was given a sheet with a line on it with things like “quiet”, “Medium loud”, “Comfortably loud” and “Uncomfortably loud”. The idea being to listen to louder and louder beeps until it becomes unconformable, they are trying to gauge where comfortably loud is. Once that is done I listened to all the beeps at the comfortably loud level and well then it was time to switch to live.

Ahh live sound, where everything is a beep, somebody talking, thats a beep, somebody tapping their foot beep. Somebody coughing…. yep its a beep. Beep beep beep, beeps everywhere, English no longer exists, its now beeplish which is pronounced beep. Lots and lots of beeps, beep beep beep beeeeeeep beep six beep. Wait what? Was that a six? Did I just hear six? It was, I heard six! Soon after that other words started coming through and well they made sense, ok they sound weird like they are being played through a really bad synthesiser thats set to something that an old NES  game console can deal with but its unmistakably words, real words, not beeplish. I suddenly became aware of my own voice, its horrible, sounds so close (well duh my mouth is the closest thing to the microphones) and well I hated it, did not want to speak at all, so I tried to make everybody else speak to assimilate all the words and try to keep myself quiet (hard to do when all the other people in the room want to know what is going on). Thankfully this “My voice is crap and I’m becoming a mute” phase did not last long. Looks like with listening to anything through this CI practice is going to make perfect, the more I listened to different sounds, the more they made sense, including my voice which currently sounds like I’m some deep bass voice (which I know is just wrong but its bearable, just).

After that we went over to the hearing therapist for Appointment 2. This is more just talking about how you are finding it, how to tackle this new found hearing (so far it boils down to LISTEN TO ALL THE THINGS!) but I assume as I get used to this ill be working with this therapist to target specific things, advice for tackling specific situations, like for example I picked a Cochlear Mini Mic as my free wireless accessory, he got it paired up, talked me through how to use it and demonstrated it. Unfortunately It did not work in the hospital for some reason but just today I tried it out in a meeting at work, and understanding speech went up again with it so its something I’m going to keep a handy.

And thats about it for now other then a few funny things have happened to me already due to this CI, so I’ve decided to post the short “stories” (if you can call them that) on Twitter under the hashtag #CIBeeps (its all about the beeps) here is a few I’ve had happen to me already if you are reading this and you are a CI user yourself feel free to nick my idea!

?: Please Take your items
Me: Eh?
Me: ohh it's the checkout machine I think: *Bitch I'll take them when I'm good and ready* #CIBeeps

— Itchster (@Itchster) August 12, 2015

Me: Where is that music coming from?
?: What music
Me: it's faint but it's not random
?: nothing is playing
it was a fan motor… #CIBeeps

— Itchster (@Itchster) August 12, 2015

Next appointment is the first remapping.

The Operation

Note: I actually started writing this post on the night of the 14th, but only just got around to checking it and posting it. Oops ahh well no harm done eh?

I’ve started writing this on the ward I’m staying in overnight. Hopefully it will be a quite fresh account of for a lot of people is the most scary part of getting a Cochlear Implant.

The day started with meeting my parents at the hospital at 7:00am (despite my mothers attempts to get me to stay the night at hers the night before, I wanted to sleep in my own bed!) we then went to Ambulatory care, which is obviously medical speak for “massive ward taking up a chunk of the ground floor of a massive building” I was on bed 68 or something and I don’t even think that’s halfway in the ward!

Then after a bit of waiting, the nurse called me in for pre op assessment, just stuff like sticking on my ID bracelet (which is really just a sticker that sticks to my hairy arms, that’s going to be fun to pull off tomorrow) asking questions (“Do you have a metal implant” not yet!). And giving me a pair of fetching tights to prevent DVT. Curiously no photos of me in said stockings exist, they all mysteriously were not taken (perhaps some threats were issued my memory is a bit hazy…).

A while after this the anaesthetist asking similar questions to the pre op assessment, things like any health problems, allergies that sort of thing. She then explained what would happen in the anaesthetic room, putting in the drip thing into your hand, making you breathe through a mask and well falling asleep.

Then the surgeon came around with a team of students, after handing him a notepad to write things down for me (asking the same questions and by this time I had worked out the order exactly so I started preempting his questions before he wrote them down).

At about 10:30 it was time, my little push bed came with me as I walked to the, well I’m not sure what it was theatre waiting bay? After more waiting another guy came out to ask me yet more questions! How deaf I was (very) what operation am I having (Cochlear Implant) and am I wearing cotton pants, well I had no idea so they needed to be checked, luckily they were not so got to keep my pants on!

Then got wheeled into the anaesthetic room, full of people, had a drip inserted into my hand, had to have these blow up what I can only describe as cricket shin guards but fully around the lower leg (That dam DVT thing again). They took out my hearing aids and glasses at the last moment, then I got the mask started breathing then, well woke up straight away in another room being told that its all done. Was still a little out of it at this point but distinctly remember shooting the guy telling me this a disbelieving look, I was then wheeled back into the ward quite soon after that, still a little out of it and just wanting to go back to sleep. The whole thing took 2-3 hours, I was “awake” (and I use the term loosely) some time after 1pm, I had no pain what so ever just a strange feeling that my ear was stuffed up, a big bandage on my head and the fact that my natural hearing what is left of it has not changed at all.

When I was more fully awake, I asked to stay overnight (it was a choice, at this point the dizziness started to kick in, and the thought of getting into a car was not an appealing one!) and was then moved into a ward room with 4 proper beds (the kind that have those electric controls to make them sit up, yes I played with it for about 5 minutes).

Other then that there is not much to tell, hospital food is well, hospital food, but I was fed an evening meal, something just before bed (basically drink and biscuits) a breakfast with cereal and a bread roll and a sandwich for lunch.

The next day was simply waiting to be discharged, getting an X-ray done (although that was a little bit undignified, basically “mush your face up against this X-ray plate on the wall please”. Then after more waiting got discharged.

And thats about it, currently at home recuperating!

Next big thing should be the start of the Switch on appointments which start on the 10th August.

Also changed the tagline at the top, I’m no longer “hopefully” getting a Cochlear Implant. I have one, I am a Cyborg!

The kitbag!

So this post is going to be about the Cochlear Nucleus 6 equipment that I have received. Basically pictures and explanations of tech gadgets! If this is well boring to you, skip this post and I will see you back here sometime on or after the 14th of July for the operation.

Still here? right then lets begin. I’ve made a swish gallery of all the equipment maybe even some witty comments:

Thats the kit bag itself, much bigger then I was expecting since well this is just something you wear on the ear, why is it in this massive bag?

Its full of stuff thats why

This is the box with the actual processor in it

A fully assembled processor with the coil, this is what I actualy will wear

The remote control with a colour screen, this is about the only thing I can actually “play” with at the moment after discovering a practice demo mode on it

Remote came with a leather belt clip case, not sure if I’m going to wear this though

Lots of random stuff, things like replacement cables, hooks, microphone protectors and a battery module that can use normal hearing aid disposable batteries

Case…. its well a case….

The rechargeable batteries, two normal size one compact size

The battery charger, also has a USB port on it for charging the remote

A mini microphone! a wireless battery powered mic that can be given to whoever you want to talk to and lets them talk direct to your processor. Supposedly its brilliant in noisy enviroments

Also has a 3.5 inch headphone port….

.. for directly connecting anything that uses such a port to stream the sound direct into the implant!

Dry and store box. This is a plug in box that you store your processor in over night

Sucks out all the moisture accumulated during the day for a healthy processor.

Pen/screwdriver thing. Yeah kinda random

Stack of manuals, thats some chunky reading to do, also came with a DVD full of tutorial videos (that are subtitled)

Ok so maybe the comments were not witty, still thats everything in the kit. Next up is the big op on the 14th of July!

The Waiting

Right before we start a warning, this is a rant, so far no new info to share about the implant still waiting for my op (14th July) the switch on a month after and getting my hands on the actual equipment pack which should be the next thing actually, should be available for me to pick up in the next few weeks, hell I might even do some sort of post about it, speaking to other implant recipients suggests that I might need a wheelbarrow to get it all home! So it’s a lot of kit, I can see the tech geek in me geeking out about it.
But that’s not the point of this post. The point is the waiting, waiting for something to happen. It’s driving me loco. I know it’s all coming but every time somebody talks to me, every time I try to listen to the TV, or a game, or even some music (base stuff is not out of bounds at the moment, just don’t ask me what they are singing, they could be singing a recipe for cake and I would have no bloody idea). It’s all a reminder that “This is going to be better/easier when I’ve learnt to use the implant fully” it’s maddening.
So if I’m distant, frustrated, irritable, testy, pissed off or just downright unsociable it’s not you its me!
My time is now, so why won’t it bloody get here already!

Got an operation date, 14th July 2015

Not much to say other then well this:

Nuf said, now to prepare!

Hospital Appointment – Decision clinic

So this past Wednesday was the big day, the day I find out if I was viable for implantation. Went to the hospital after moving through 3 waiting rooms I waited more, and a little bit more, and then some more! It was past my appointment time, I could not take the waiting any more, it was torture. Then we found out that they were in a meeting… After what felt like an age (in reality it was probably something like 15 min) we got called in. 

The consultant quickly went through the results of the testing (nothing abnormal) then told me his recommendation:

They though I would benefit from a cochlear implant and did I want to go ahead?

Don’t think I’ve said yes quicker ever in my entire life! Then he asked my mom (who insisted on coming along) some questions about the family history I think, not sure I gave up trying to follow the conversation after a while. I signed a consent form then it was back to the waiting room for a pre screening for the operation. 

Had to fill out another questionnaire about my health (general stuff including if you have ever had a reaction to anaesthetic). The pre screening itself was like a health check up, they gave me a meningitis shot, took my blood pressure then she wanted swabs, one from my nose, one from my mouth and one from a place I’m not sure I should mention, let’s just say it involved taking my clothes off (in private!) and leave it at that eh? It’s all for testing for MRSA and other nasty things I could apparently be carrying. After checking my weight and giving me a heads up about what to expect after the op in regards to healing and so on (I can’t wash my hair for a week!) they took me to be weighed and then that’s it. 

Just waiting for the appointment for surgery now, could be any time in the next 3 months. 

Cochlear Candidate Information Day

So this was a sorta presentation thing by the Cochlear company (thats the name of the company that makes the Nucleus 6 Implants). It went how you would expect a corporate thing to go, freebies (pens, rubbers leaflets and the bribe, I mean chocolates in the picture).

Then their was the presentation, all live text scribed as well (well they are dealing with people who can’t hear!) so it was not an issue for me to keep up with it for once! They talked about the company, you know the normal stuff for this sort of thing boils down to “we are great we do so much of this look at our shiny HQs!” not much interesting for me then they moved on to explaining the Nucleus 6 in quite a bit of detail:

• It has a nano coating to make it splash proof, also has additional expensive accessories (we are talking £30-160) for various ways to make it totally submersible (these range from “put it in a special cut plastic bag and stick it to your head” to a full plastic jacket not unlike a phone case but totally sealed in)
• Wireless accessories: a mini microphone that you can give to people to clip onto them or use it in a group situation by putting it on a table. A bluetooth phone clip thats basically a bluetooth headset but clips on to your body since the sound goes through the implant. And a TV streamer to stream that sound direct. The cool thing is though you can mix the sound from the wireless accessories with the sound coming from the processors microphones so you can hear both at the same time and control the balance between the two.
• They also mentioned a “in development” feature. Made for iPhone compatibility, not sure if they meant this is coming for the Nucleus 6 or a future processor model they only said “in the future” but it looks like the audio streaming and using an iPhone app to control the implant like you would with the remote control that comes with it. Handy since well you would not have to have the remote you could just use an iPhone, also had a feature called find the processor, for all those times you misplace it, considering I do that all the time with hearing aids at home (not when out and about) that will be handy!

They also mentioned something about including accessories with your implant order, so not sure (i should of asked it did not occur to me at the time) if that means that I can pick some accessories when choosing the implant/colour with the NHS picking up the tab or you add them on to the order and well I pay. Hmm either way I can see that mini microphone being the first must have thing, still don’t quite believe that ill be able to talk on the phone with this at all. but we will see.

After that presentation they had a current cochlear implant user give a speech, answer questions and so on. The one thing I came away from with that was he did not struggle to understand people speaking at all, I have no idea how his actual speech was, my parents never said anything odd about it. But he had no trouble talking and engaging with the room. So I guess thats proof it can work eh?

Fourth appointment: Audiology Cochlear clinic

Note: this actually happened on the 6th of Feb but I forgot to post it to the blog oops!

Today was the mystery audiology clinic appointment. Well mystery solved it was hearing tests mainly. 

The first two tests were set up with a row of monitors and speakers in a semi circle arc type thing. I sat in this circle and watched a video of a guy speaking to me (it was only in the monitor right in front of me the others were not used for my test anyway). The idea was to simply repeat anything he said that I understood. I had to do it both with my hearing aids and without. Seriously stressful for me I hate having to strain to understand strangers  

The other hearing test was the standard test they give you all the time, anybody who has been to an audiology clinic will know what I’m on about but it’s basically they give you a button, you listen to sounds either via headphones or a speaker and you press the button when you hear something. 

After that it was a questionnaire with questions like how your hewing effects your life (social situations, work and so on).  

So that was that! Next up is some sort of “Candidate day” organised by the company Cochlear (the manufacturers of the implant I think I’m getting) I suspect it’s some sort of sales pitch but what the hell eh?

Third Appointment: MRI scan

So I lied a little about the next cochlear appointment in my last post, actually got another appointment the day after posting it a MRI scan on Tuesday.

Not a lot different from the CT scan I had just a few points though:

• Had to remove everything metal, glasses, hearing aids even my belt.
• Had to fill in a questionnaire about my health nothing to probing just if you have any implants (not yet!) or had any metal in your body, its all about the metal!
• They offered me ear plugs, put them in anyway but I doubt it would of made any difference.
• They put this plastic frame thing over my head to keep my head still, sorta reminded me of a medieval torture device, if they were plastic.
• The actual scanning tube thing is tight, not sure if they had me higher up in the tube to get my head closer to the actual scanner but lying down with my arms on my chest caused them to touch the top of the tube when getting pushed in so yeah you will probably want to keep them at your side.
• The thing vibrates quite a bit, so it must generate a bit of noise (hence the ear plugs)
• Was in the tube for about 10-15 min, its a little bit disorientating at first but then its just boring since its just a white plastic tube with a grey sticker stuck at the top of it. Did not feel a thing other then boredom.

Next appointment is the mysterious audiology appointment, assuming another appointment does not come in between then.

Second Appointment: CT Scan

So last Friday I had a CT scan.

To be honest not a lot to say about it, I had to remove anything metal around my face (hearing aids & glasses in my case) then they explained what would happen, which would of been better if they did that before I took stuff off but ohh well. They got me to lie down on a bed moved me in to position brought me out again put some foam squares at the sides of my head then strapped my head to the bed, then moved me in again and let the thing whirr around. There was a little see through panel you can see while in it seeing the thing whirr around. They did not inject me with anything like it said in the leaflet they sent with the appointment so it was just a case of lie down and well thats it! Whole thing took about 10-15 min once in the machine.

Next appointment is in a few weeks mysteriously called Audiology Cochlear Clinic. No other information I’m assuming that this is some sort of new hearing test I’ve not done before.