I don't accept limitations

Last week was the week of the 'boom,' the huge lift in volume which burst my previously quiet bubble. Time has passed very quickly since then and I have grown used to the CI, in that I am struggling to remember what it was like with just the HA in my left. Sometimes I wonder if I did as badly as I thought I did, but then I realise that I could never hear or make out familiar music with just my HA, whereas now I can, with some repetition! Today I had another mapping and a hearing therapy appointment. The hearing therapy appointment was useful in that I learned a strategy for rehab. It goes like this: Looking at the CI user, tell them what context you will use when saying a sentence. Eg: I will say, "In the mornings I..." The CI recipient has to then listen with eyes closed/looking away, to that sentence starter and then figure out a single new word or phrase. Eg: "In the mornings I brush my teeth." The brain will be anticipating likely options and this hel

Yes, I know - I haven't posted much, but nothing much has happened, which seems hard to believe! I did have family over on Sunday and we had dinner. I noticed I was able to follow a lot more of the conversation and I felt much more relaxed as well. I continued listening to music on YouTube and did a lot  of AB Sound Success Rehab work, highly recommend it! I did, however, notice that my volume was dropping so had waited excitedly for today's appointment so, here goes! Wow! Today, I had my 10 day assessment appointment with the loveliest audiologist you could meet! I could not imagine how things would change as I thought what I had was pretty good, you know - it was better than my old hearing aid for sure, so I honestly could not contemplate any possible improvements. I'm going to break this down so it makes sense for people who have asked what happened. 1 - Sat down, had a brief chat about all the things I was hearing, and how things had become easier for me since the s

If you haven't checked out day 3 - please do so, as I have compared my experiences in listening within a quiet environment with a noisy one. Again, my experience is my own! Today was pretty amazing. Wearing my CI with my HA on its lowest volume, I went to school, and instantly realised I didn't feel as on edge as I usually do when preparing to listen to people all day. I was relaxed, and I chatted with a number of colleagues briefly, recognising that they seemed so much easier to understand. I feel as if my voice has changed in volume and maybe clarity, I don't feel as mumbly. I caught up with one colleague whom I have known for longer and better than most in the school, in the background was  'The Lark Ascending' , which was playing fairly loudly, yet we had a conversation at length and at the end she commented that before my CI, I would have gone and turned the music down but that I had picked out everything she said over the music! At lunch time, I took my

I have just taken my CI off after 8 hours of usage with my HA in my other ear. I am cream crackered! I am so tired I am just going to bullet point my observations. When I keyed in the code for the building, each button made a beep! Never heard it beep before! My board pens are squeakier on the board than I remember.  Doors generally make a more audible creaking sound.  The children are interesting to listen to. I found myself not having to really squint and concentrate on them. A couple of times I had to ask children to repeat but they had very soft voices and so I explained that they needed to speak up.  The hall assembly was interesting to listen to, I felt more comfortable listening to what was happening further away as children received their certificates whereas before it had always been indistinct.  Playtime was ok, children weren't too overwhelming and I could talk to my colleague over the noise without too much trouble.  I got some equipment from the PE store and c

Woke this morning and after breakfast, I tried out the same videos on YouTube as I tried yesterday. No obvious difference but I did stumble across this beauty:  Rag'n'Bone Man - The song is called 'skin' and his voice is so gorgeously rich at the start. No instruments for the initial bit, just his voice and it sounded almost as I remember it, just with that tinny undertone. It was much colder this morning, frost had settled upon the cars and so I ventured off to Longton Nature reserve to investigate the birds. Investigate being the word an elderly gentleman used when he spotted me stood stock still by the water, waiting for something. "Investigating the birds, are you?" I think he said. I replied that I was listening out as I had a cochlear implant. I'm not 100% sure I heard everything but the gist of it was: was it under my skin? Was it very strange? It was at this point I heard what sounded like something dive bombing. Turned out to be a gaggle of mal

I want to start by saying that everybody responds to their CI differently. My experience is different to everybody else's. Yes I can hear/detect music and voices but the quality is still very robotic. I hope this is a useful reference point for others interested in what a CI sounds like. Woke up this morning and it was raining. After getting ready and dressed, I went to the kitchen to clean up and sort stuff out. I needed to put the ironing board away so I opened our outside door to get to our utility room which is just off the house (don't ask) - and I was aware of a steady hum, like passing traffic. I realised it was the rain! As I stood there, I became aware of a drip, drip, drop noise and looked at a row of pots outside. Every so often a drop of rain hit the pot in such a way it made a sound distinct from the sound of the rain hitting the roof, gutters and floor. I put wellies on and went into the garden wearing a raincoat, honestly, I felt like a child at Christmas. With

Words cannot describe how relieved I am! And grateful, and lucky. I had my switch on today and it went as well as it could have done, considering I was born deaf, and profoundly deaf at that! Everybody reacts differently, this is my experience, and may not be the experience that others have. The testing of the electrodes was strange. I quickly got over the sensation of having a magnet on my head and for the most part today, I have not been aware of having anything on my ear and on my head. At first, the beeps all sounded the same, but as the test progressed, they sounded more like different keys being pressed on a piano. The poor audiologist had the patience of a saint because instead of telling her how loud everything was, I was excitedly yammering away about the pitches and comparing them... whoops. The higher pitches were physically jarring to experience, it was almost as if the sound was splitting my brain. That's what I've noticed today, my brain is hearing the sounds! I

I was helping a friend move house this weekend which involved cleaning his kitchen cupboards with copious amounts of bleach solution. It's a miracle I didn't pass out from the fumes! It was a long day because even though I have managed OK with just my right hearing aid for the last four weeks, it has been largely because I have interacted with a narrow range of people. Or I have been able to anticipate what was being said. And this weekend I couldn't. It was so sad to be told, "You don't understand most of what I say, do you?" by someone who I have known for 12 years through my husband. Yes, I understand them sometimes but typically if it's one to one, or I have initiated the conversation and therefore can anticipate what might be said. Otherwise, it's the strangest feeling of hearing a foreign language. I can hear the voice, how it sounds low and gruff and the rhythm of it, and how they say certain words, but unless the topic is clear then it's in

Yesterday I received confirmation of my switch on date! It is.... *drum roll* on Monday, 6th November at 10:30am. Otherwise known as the first Monday back after half term, also known as not-so-great timing since the children will go back to a supply teacher on the first day back! In my head, it was going to be during half term, the week prior to that Monday, but really, as my op was on the 5th October, the 6th of November fits the four week waiting period so can't really argue with the schedule. I also received all my follow-up appointments up to early December. Thankfully, these are all on Wednesdays, which is my PPA day so about half of them won't interfere with the teaching job. As Ophelia continues her approach, the wind is picking up a little. The sky is still that strange half light/half shadowy apricot. Let's see what this sounds like. Seems fitting!

Today is the day that Ophelia (the storm) hits Ireland and the Western parts of the UK. It's meant to get really windy from 3pm but even now, there is a strange, apricot glow to the grey clouds that hang in the sky. Really, any minute now either Dennis Quaid or whatshisname that did Robin Hood and the Body... Ah, Kevin Costner, will appear now to announce the end of the world. Well, there is that colony of penguins that was recently hit by a catastrophic loss of life so I guess in some ways, it is the end of their world. Yesterday, Peter and me went for a walk as I'm still feeling quite unfit. Managed 40 minutes walking and as we passed the shops I walked through a pile of leaves, deliberately kicking them up. And heard not a crinkle, a whisper or even a rustling. With my right hearing aid, if I don't think too hard, nothing sounds much different. Except, I'm having to rotate my whole body to locate sounds, to fully concentrate on speakers. My left is a black hole of

The last four days have passed in a blur of co-codamol  fogginess and spontaneous naps but now it seems, the fog is clearing and today is the first day that I have not needed to sleep! Early this morning, Peter and I set off to catch a train to Manchester. Unfortunately, it was delayed which meant that once we arrived at the other end, it was a mad dash in a taxi to make our x-ray slot! Within minutes of arriving, we were seen and my x-ray was done and dusted. After that, we made our way to the ENT department to see Mr Freeman, the frankly amazing surgeon. I was really nervous, I had it in my head that I hadn't been implanted (ridiculous), that it had been only partially inserted (a possibility I was warned about) or that there had been problems (likely, since I have malformed cochleas and had been warned of sub-optimal outcomes). No such issues! Mr Freeman revealed that all had gone perfectly and that, amazingly, they had been able to insert the longer electrode! Hooray! every

I had my surgery on October 5th at Manchester Royal Infirmary. I was booked in for 0715 and I arrived for 0700, sat with Peter in the waiting room and listened to some music for the last time with both hearing aids. (Birdie - Wings, Maggie Rogers - Alaska) Fortunately for me, I was first on the list which meant my surgery time was between 0830 and 0900. I was a colossal wuss, and cried when leaving Peter, so much so that they had to call him back because I couldn't concentrate to answer the admission questions.  While waiting for the surgery, we met the a naesthesiologist then the surgeon. It all seemed to happen very quickly and before I knew it, I was stood in a rather undignified hospital gown and trying to preserve my modesty while asking last minute questions about the location of the processor magnet. The surgeon was lovely and explained the surgery would take between one to two and a half hours and that all was in hand. To help him identify the correct side of the skull to

So there I was last week, I hadn't heard anything since my pre-op, and was getting twitchy at the lack of communications. I emailed a different person, the person in charge of 'The List' and was shocked, stunned and quite excited to receive an email saying that my surgery has been booked for..... THE 5th of OCTOBER. THIS YEAR. As in.... less than a month away! Precisely 23 days. Holy crap. Oh my GOD WHAT AM I DOING? I told my Boss the next day, they're all really supportive. Hopefully I will only be off for 2 weeks, there's a school trip the day I hope to be back so we'll see.... From looking at the dates, I would hope switch on will be in the half term but shan't find out until the day of surgery. I've emailed a rep with Medel to ask a bunch of questions: I've copied them to here and I'll copy the reply once I've received it. 1 - So technically, the length doesn't matter, as long as it fits the cochlea. Mine is tiny, I think it

I had my pre-operative assessment in Manchester today. I had my height, weight, blood pressure checked and then blood taken. All done within 30 minutes, not the 1-2 hours listed on the letter! This was followed by me killing time at Manchester Museum, I like checking out the critters in the vivarium. Inside the glass enclosures are beautiful little poison dart frogs and all sorts of lizards. After spotting lots of cute frogs I went back to the hospital for my final hearing test. When I got into the testing room, I was really nervous that they were going to repeat the open set sentences discrimination test, which is awful to do. Turns out it was just a straight forward bleep test. The lovely audiologist explained that everything was done and that it was a matter of waiting for a date. Several people currently on the wait-list are too poorly to undergo surgery so hopefully I'll get an operative slot fairly soon. In other news, this finally grew on me , it's ridiculously ca

I met the actual surgeon, a Mr Freeman, last Wednesday to discuss my case further. It was really informative and I left feeling more confident and optimistic about the procedure and outcomes. In short, my case can be summarised as follows: 1 - I have bilateral hypoplastic cochleas, which is essentially 'under formed' cochleas. I have three quarters of a turn as opposed to the two and a half turns typically found. 2 - My cochlea on the left side looks like a very flat number 9 in that there is a curve at one end but it is very small. Regardless, the surgeon is optimistic that an electrode array could be inserted along the cochlea's length thereby giving me a full range of pitch perception, theoretically speaking. 3 - Medel has two cochlear electrode arrays which are suitable. One which is 12mm (tiny) and the other which is 19mm. The surgeon is optimistic having looked at the scans, that the small one will fit. However, they will have a small probe they can insert to ch

I'm on the list for surgery! Yesterday, after waiting to be seen for what felt like an eternity, I was ushered in and came face to face with the head of the CI clinic and one of the surgical consultants at Manchester Infirmary. After a smattering of small talk, I was informed that 'we would be happy to offer you a cochlear implant in your left ear.' I was so stunned I didn't speak for a moment. It was absolutely surreal. And then there was a plot twist. I have a malformed cochlea. My cochlea isn't shaped like a seashell spiral in a pea. It's shaped like a 'spaceship,' or as it was charmingly put to me, 'a blob.' The upside of this is at least  I have finally learned the cause of deafness after 31 years! The surgical consultant said that I had done extremely well to get to this point considering the biological ineptitude of my inner ear. What does this mean? It means, while the surgeon is happy to operate, and he thinks it will be 'straight-

I finally have an appointment to meet with the ENT surgeon at Manchester! I only discovered the date of it after emailing and asking Peter to call as it had been a while since I had the scans. I see the surgeon on June 6th and I am finally starting to feel a touch nervous. Facebook has been a great source of information with a host of groups dedicated to people with CIs and those considering them, but it feels so speculative to ask questions within a bubble of a community with such a range of experiences and backgrounds. Before I attend the appointment, I will be drawing up a list of questions to ask the surgeon in order to help reassure me of any decisions made. From what I gather, this is the appointment where I get an official yes or no and the enormity of that is slowly sinking in. I have to think about the immediate implications for my job as a teacher and short term recovery as well as adapting to the CI. I had hoped, somewhat unrealistically and optimistically, that surgery co

I had my CT and MRI scans yesterday. The experience was not as stressful as I thought it would be, and Peter came with me just so I didn't feel anxious about travelling and finding the correct place to be. The CT scan was straight forward, in and out in 5 minutes or less but the MRI was another experience entirely. I had one when I was a child, or maybe I had a few as I was born with hydracephalus which required a pair of shunts to remove the excess fluid from my brain. I was nervous as I was irrationally convinced that the internal structure might have been left which, being metal, would have been unhelpful inside a large, noisy magnet. I was fine up to the point I had the head brace put over my face, but as I slid inside I was suddenly overcome by panic. It was the fact the top of the scanner was so low over me and the speed at which I was put inside so I squealed and whimpered pathetically and asked to be let out. The technician reassured me that any shunts would be programmab

Scans next Wednesday. Starting to feel very real. Was expecting the process to take almost a year but doesn't seem like that now.

So, time for an update. I had the counselling and expectations appointment at the end of January which was really interesting. The hearing therapist went through all of the pre-operative steps of scans etc, the surgical information and recovery process. She went through the rehabilitation process, it seems very intensive with two weekly appointments in the initial few weeks to tune the programming. She then showed me a Medel CI, and detailed how it worked. At this point I queried whether the choice of all three would be available and she said that she would find out. I had to do this questionnaire which she created, it had all sorts of questions about what I thought I might be able to do with a CI, and how I rated my present levels of hearing. It was reassuring to go through the process as I could ask the random questions I had on my mind, it also gave me an opportunity to demonstrate myself as a well informed candidate as I mentioned things I had learned from other people and online