Posts

What the actual f.....?

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-f…

Waiting....

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 cou…

Taking pictures of my insides

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 programmabl…

More steps

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

Tiny steps

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 …

It's been 84 years

It feels like the scene from the start of 'The Titanic,' you know, the bit where the old lady utters, "It's been 84 years.' Well, it's been almost four years since I saw this blog and a lot has changed. I'm married, I live in a house with a garden and it's only six minutes drive from a school where I work. Yes, I made it! I made it as a qualified primary teacher! I absolutely love my job and have worked bloody hard to keep myself going in my career. It's hard, but it's hard for all teachers as we have so many demands made of us. I wouldn't change it for the world, nor would I know what I would do instead.

So, no faffing here.... I'm a candidate. It finally happened! I didn't hold out any hope of anything changing but following my first rejection, I regularly revisited Manchester for hearing aids check-ups and formed good relationships with the audiologists there. They have been fabulous. They really care, and have listened to me as …

Fcuk fcuk fcuk FCUK

So. My blog title is ridiculous, when you think about it. I don't accept limitations, yet my hearing is a serious, shi**y limitation. It won't ever be cured, it won't ever get better and there's nottttthing I can do about it. I'm 26 and I still can't accept it.