Sunday 24 June 2012

I've been invited back to the clinic.....

I've finally got my appointment with the consultant. It will be on Tuesday 3rd July at 3:15 pm. We'll discuss the results of my assessment. Is this when I'll find out whether I'm suitable for a Cochlear Implant or not? I'm a bit nervous!

Thursday 21 June 2012

It's a no-brainer, right?

Over the last few days, I’ve had time to sit down and do some research. My main aim was to find out what the risks and disadvantages of having a Cochlear Implant might be. There is an overwhelming amount of information out there, some biased, some balanced. The difficulty is identifying which is which.

Here's some of what I've found so far:

  • Not everyone is a good candidate for a Cochlear Implant - I'm still waiting to find out...
  • Implant procedure is invasive and could destroy any existing "conventional" hearing (i.e. picked up by my ear drum, small bones and cochlear) on the side they operate on - only a problem if the operation doesn't work? - this is because the insertion of the implant into the cochlear can damage the few remaining hair cells that actually work
  • Risk of serious infection to the surface lining of the brain and meningitis - they vaccinate against meningitis to reduce the risk
  • Risk of fluid leakage from the brain or cochlear into the area created for the implant
  • Risk of implant rejection, if the body rejects the implant
  • Risk of increased tinnitus - I get this already...
  • Risk of dizziness and vertigo
  • Risk of permanent paralysis to the facial nerve - I don't like the sound of this one
  • Risk of changes in taste sensation - could be useful for chocolate and wine
  • Risk of Cochlear Implant manufacturer going bust - means no support, or software upgrades, surely not very likely in the current climate...??
  • Pain and numbness around the ear for a few days or weeks - I expected this
  • Must avoid contact sports forever, to reduce risk of damaging implant, more surgery would be needed if it was dislodged or damaged - I'm not really one for them anyway
  • Must avoid CAT / MRI scans forever and anything with a strong magnetic field, like metal detectors - what happens if I need a scan in the future?
  • You only get one Cochlear Implant due to limited funding, although children can get two - one is better than none though?
  • Cost and hassle - leading up to, and after the operation, weekly visits to Cambridge, arranging childcare, disruption to my family, rehabilitation over a year, not to mention the non-stop effort of learning all the new sounds I've never heard before - not sure this last one is a disadvantage...
So... suddenly the no-brainer doesn't seem quite so straight-forward. Perhaps my hearing isn't so bad after all?

Tuesday 19 June 2012

No news yet but.....

On Embarrassing Bodies, Channel 4 tonight, there's a piece about Cochlear Implants. A woman called Suzanne, who I don't know, had one fitted recently. I'm not sure what they'll show, but it should be interesting one way or another.

It'll be on at 8:00 pm. I am hoping for the boys to be in bed, fast asleep! I hope you can watch it too, and I'll be keen to hear your views. Please post the comments on my blog.

The big question is, will this put me off having a Cochlear Implant if it doesn't work for Suzanne?

Monday 18 June 2012

My thoughts for the day

It’s only today that I am starting to think, yes, this could be it. I’m beginning to feel excited about the idea of having a Cochlear Implant. The question now is not whether I should go for it, but more of, am I suitable to have one? I’m starting to panic a little, and hope that I can have one.

I must be patient and wait for the letter to arrive in the post. Will it arrive this week?

In the meantime, whilst waiting, I should probably read more about the disadvantages of having an implant. There are risks, after all.

Saturday 16 June 2012

The day after

My assessment day arrived before I knew it, and I felt as though I hadn’t really thought about things properly before I’d got there. It was reassuring to have Dan with me. I know he’s very excited but he doesn’t put any pressure on me, and reminds me that I don’t have to make a decision straight away.

I can just remember sitting down in the waiting room for my first appointment. The posters and photographs on the wall reminded me of my childhood, when I used to have hearing assessments and speech therapy sessions as a slightly confused little girl.

I appreciated having a pre-booked BSL interpreter. It made me feel relaxed. When she arrived, I wanted to sign away and have a nice conversation with her, but she was there to do her job and I was there to do the tests.

There were two particular tests I had to do that I found difficult.

The first test was my hearing test. I’m not so keen on the hearing tests because they don’t work with my tinnitus. Most deaf people get tinnitus, and it tends to get worse when not wearing hearing aids. For the hearing test, I had to take mine out. After been given a set of head phones, I had to press a button every time a beep came on. It is difficult enough being deaf, but even worse with my tinnitus playing tricks on me. But I did the best I could.

The other test I did, I had to sit and listen to five different sentences which came from a loud speaker. I got a little bit upset at this point. I thought to myself, I really can’t hear what is being said. I did manage “The” once but nothing else. I used to be able to hear better than this, surely. Without stating the obvious, it did bring home to me that I’m well and truly deaf. Dan told me not to worry but I couldn’t help feeling sad. But he was right. I am here after all, to see if they can improve my hearing.

Friday 15 June 2012

My first Cochlear Implant assessment

Dan dropped the boys off early at breakfast club, and then we drove the 2 hours to Addenbrooke's Hospital in Cambridge for my first assessment. We arrived just in time for the first 10am appointment, followed shortly after by a BSL interpretor, who I'd booked in advance - lovely as I knew I'd be able to relax and not have to rely upon lip reading the whole time.

And so began a long series of tests and questions, as well as a handful of answers along the way. The objective of the day was clear - to check my suitability for a Cochlear Implant, perhaps ending with the eventual offer of surgery and rehabilitation over the next few years.

First, I had a standard hearing test (headphones on ears without hearing aids) and then a bone conduction hearing test (against my head). Then I had a speech comprehension test, listening to five spoken phrases and trying to pick out what was being said. I could only manage to pick out a single word, "The". The results were poorer than those recorded at my recent visit to the advanced hearing clinic.

And then we moved into another room to discuss Cochlear Implants in more depth. The benefits, the technology, the risks, the expectations, the reality, suitability and so forth. I was gently reminded again that not everyone is suitable, and even those that are experience different levels of change. It's not a cure for deafness, but in some cases, not all, a Cochlear Implant has the potential to make a remarkable difference. Could it really help me?

During the meeting, the audiologist talked about the new sounds I might be able to hear - birds singing (now that would be amazing), gentle rain drops, flies buzzing, the letters S or Z as well as a whole wide range of sounds that many hearing people take for granted - perhaps even voices without lip reading.

But again, my expectations were very carefully managed. Everyone is different, and will have a different experience. The research indicates that adults who have been hearing and then gone deaf, tend to have a better hearing ability (they call it "outcome") compared to those who have always been profoundly deaf, like me.

After this discussion, I was asked to read out some text and describe some pictures while being filmed. The quality of my speech and use of language is apparently one factor in deciding suitability.

At around half 12, Dan and I had a rather quick lunch break and then went to see a nurse to weigh me, check my blood pressure and get a full run-down on my personal and family medical history. This was a surprisingly quick session lasting just a few minutes.

The next appointment was an auditory processing test to check the health of my auditory nerves - essential for a Cochlear Implant. I had 3 electrodes stuck to my head, and then had to lay down on a bed for 20 minutes. During this time, my auditory nerves were stimulated with electrical impulses (it sounded like a hissing), with my brain activity recorded.

The final test of the day was a CAT scan, partly used to gather information about the shape of my cochlears, which could determine the choice of implant, if we get that far.

And so the day was complete, all tests done. From here, the team will review their findings and decide whether or not to offer me a Cochlear Implant, probably within a few weeks.  The waiting game begins...

So what exactly is a Cochlear Implant?



In a "hearing" ear, sound causes the ear drum to vibrate, which in turn vibrates the tiny bones in the middle ear. These vibrations move the fluid within the cochlear in the inner ear, and the flow moves against receptors (hairs) which fire electrical impulses up the auditory nerve to the brain. The sense of hearing is created by the brain's interpretation of these impulses.

Unlike a conventional hearing aid, a Cochlear Implant bypasses the eardrum, middle ear bones and cochlear hairs.  Instead, and from within the cochlear itself, the implant produces the electrical impulses required by the auditory nerve.

According to Wikipedia:

"A cochlear implant (CI) is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing.
Cochlear Implants may help provide hearing in patients that are deaf due to damage to sensory hair cells in their cochlea. In those patients, they can often enable sufficient hearing to allow better understanding of speech. The quality of sound is different from natural hearing, with less sound information being received and processed by the brain. However, many patients are able to hear and understand speech and environmental sounds. Newer devices and processing strategies allow recipients to hear better in noise, enjoy music, and even use their implant processors while swimming."