.

From hearing aids to cochlear implant

A guest blog by Kirsteen Allison

 

Kirsteen Allison blogs about her cochlear implant
From hearing aids to cochlear implant is a guest blog by Kirsteen Allison.

Kirsteen is a working mum in Scotland writing about her cochlear implant and experiences of deafness 2012/2013.

We welcome your comments. Please leave them below. 


 


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One year on
24 August 2013

I can't believe that just over a year ago I was getting my head drilled into! I've come so far since then, I can now hear the wind in the trees, I can enjoy music again, I can hear birds, I can hear familiar voices on a mobile phone (but strangely nothing on a landline) and much more.

My confidence has come on leaps and bounds. I feel much less left out than before. It really was the best decision I have made.

There are still times when I struggle and I have to keep reminding people of this. I struggle in group situations, where it can be noisy and several people speak at once. Just yesterday I was struggling to follow a conversation on a busy noisy train. Sometimes I miss the door knocking and other times I do not hear the office fire alarm.

But its still a big improvement!

I had another check up at the Cochlear Implant Centre where I underwent the same tests as before - watching a video with and without sound. The results were really interesting. My score for sound and lip-reading together was 100%!!! Interestingly my score for lipreading alone had dropped. I was told this was because I was relying more on hearing than lipreading and this is to be expected with cochlear implants.

I'm really pleased with my results!

I also had my hearing aid in my non implanted ear adjusted although the sound will never be as good as I want it to be. I would still love a second implant and be bi-lateral but I just have to wait and hope that things change in the near future!

That's me now finished my blog and I hope you enjoy reading through it and watching my videos. Feel free to continue asking me questions.

No, my hearing loss isn't 'cured'!
29 March 2013

I'm finding I'm having to remind people often of what I can and can't hear because many people assume my hearing is now perfect or as some say 'cured'! I'm hating being told I'm cured! Deafness can be difficult but its not a disease or something!

I point out to people that conversation is much easier, but I still have to lip read as I'm not catching everything (plus I guess its a hard habit to break after about 25 years!). I can hear people on the phone but I cannot hold a full conversation. I'm only getting the odd word here and there on the telephone and therefore prefer to continue with text messages or my text phone.

I also still cannot hear the door knocking and still have to rely on my family to tell me the door has gone. There are some alarms I can now hear, and some I cannot.

Noisy situations are difficult as there are so many noises to filter. Last week I was in Asda and clearly did not hear a woman behind me trying to get past. She decided to take matters into her own hands and ram the trolley into the back of my legs! Very painful. When I tried to explain I was deaf, she clearly did not believe me and shouted (amongst less pleasant words) that I was 'rude'.

So whilst I can hear lots of things better - conversations, voices on the radio, music, voices on the telephone rather than just silence, some alarms, pedestrian crossings, crying babies, police sirens, kettle boiling etc, there are still a few things I'm not quite there yet with.

Also I think sometimes I hear something and sometimes I don't, as I said earlier, I think its to do with how noisy the environment is and also what I'm doing - if I'm busy doing something,I might not be 'focusing' on hearing something, if that makes sense.

I think next time I visit the cochlear implant centre, I'll ask for advice and help with noisy situations. On my last visit, I had two of the four programmes taken away as I didn't really use them, but maybe I'll ask for them back and start using them again. It might help.

Disappointment
02 March 2013

My updates are less frequent now, sorry everyone, but that's because I've been busy and also because my appointments at the cochlear implant centre are decreasing so I haven't had much to report. I get check ups at eg 2 weeks, 1 month, 3 months and my latest one was 6 months. My next one is at 9 months, then after a year, it is just once a year.

I asked for the volume to be increased at my latest appointment. I felt it was too quiet. It is loud now and taking some getting used to but I'm hearing new things again which is good. I heard an angry car horn for the first time and also when I went to adventure golf with my family, the animations around the place were so loud!

Music is also sounding strange again. I can hear the words but the music doesn't sound quite right. I know from experience I will get used to it, its simply the new volume I've been given.

I was also told to put my hearing aid back in! The volume on this was turned up to the max and it is better but its not as good as I'd like nor can it ever be. I was advised that it is better to have some hearing in that ear than to go without. Also if I were ever to get a second implant, the transition would be easier if I have spent some time being bimodal (which means using a cocglear implant and hearing aid together).

Speaking of a second implant, I spoke with the head of centre at my appointment. I explained I really wanted a second implant and asked if there was any way of making this possible. However the centre said I do not meet their guidelines  - that I would be a candidate if I were registered blind or had gone deaf through meningitis. The guidelines may change in the future, but until then, the best I can do is be bimodal.

Its very disappointing but my centre have also offered to look into better hearing aids for me as my current hearing aid is at maximum volume and it's still not good enough for me. So I'm waiting to see how that will go.

Still no word from Hearing Dogs for Deaf people. I've been informed I should be matched this spring although I'm still waiting to hear. Others who have been waiting less time than me have been matched which is disappointing. I have been waiting 4 and a half years, and although I keep being told it's worth the wait, its extremely frustrating!

I hope to be able to share my experiences here once I'm matched, so that my blog will be an interesting mix of cochlear implants and hearing dogs!

So overall quite a disappointing time of it at the moment!

Reintroducing a hearing aid
23 January 2013

Happy new year to you all! Its been a busy few weeks what with work, christmas etc so apologies for the lack of updates.

At the end of November, my cochlear implant centre advised me to reintroduce a hearing aid into my non implanted ear. I wore it for a month before I had to stop wearing it.

I really hated the difference in sound between the cochlear implant and the hearing aid. The sound is not balanced. The sound coming into the hearing aid is very muffled. I felt as though I had a pillow over my ear.

Obviously the hearing aid cannot give sound as good as the cochlear implant but I was surprised by how quiet and poor the sound was, considering I wore hearing aids for 25 years pre implantation. I could not turn it up any louder.

I found myself getting confused and understanding things less well when I wore both the speech processor and the hearing aid. It was as though I was taking steps backwards rather than forwards on my journey to better hearing. I felt I did better with the cochlear implant alone so I stopped wearing the hearing aid.

My audiologist did say that she did not want my brain to work for the hearing aid over the cochlear implant so therefore she would set the hearing aid a little lower. I will see when I return to the centre if she can make the hearing aid sound any better but I suspect I will carry on without it.

Ideally I would like two cochlear implants so the sound is 'equal' in both ears but a second implantation (for adults) is dependent on funding and circumstances such as additional disabilities. I hope one day this changes!

As for the current cochlear implant, I'm hearing more things all the time. Popcorn popping at the cinema and being able to follow the whole of Les Miserables (a highly recommended film!)

Hope to have more to update soon!

Year in review
10 December 2012

This will probably be my last blog post of the year so I wanted to do a short year in review.

First I wanted to show you my latest audiogram results, which more or less sums up how far I've come in just over 3 months since switch on. On this, you can see where I was back in May when I underwent all the assessments for a cochlear implant. You can also see where I am now. A big improvement, don't you think?

tests pre and post cochlear implants

I reckon this is proof more than anything that I made the right decision to have a cochlear implant and I hope it offers others considering an implant some reassurance that it is indeed worthwhile. I can hear so much now - fire alarms, telephones ringing, music playing (and identify the song), pedestrian crossings, school bells, keyboards, conversations without looking at the person all the time and more.

Another significant change has been to my confidence. Several people have commented on how I am much more 'chirpy' since the operation. I feel so much more included both at work and in social situations, I feel less isolated and more likely to 'go out there' and do things.

My social life has improved a bit - I'm really enjoying my sign language course and I would not have signed up for it if I had not felt I would be able to cope better in a college environment with the implant. I'm also exercising more - again I'd avoid exercise classes because of the fear I wouldn't understand the instructions and go the wrong way or something!

Being able to do things I could not do before, and enjoy things I haven't been able to do for a while, has made such a huge difference to me. It may sound strange but I can feel the 'old me' coming back and I don't think I've felt this happy in a long time.

I am due back at the hospital to reintroduce my hearing aid into my right (non implanted) ear. I'm a bit unsure about this as my surgeon told me many implantees find they do not like wearing a hearing aid in their 'other' ear as the sounds are conflicting and confusing.

Then again, some implantees do fine with a hearing aid and a cochlear implant together. I'm not sure how I will feel but I am very conscious of the lack of sound coming into that ear so I'm keen to try it and see how I get on. I'll hopefully be able to report back on that in the new year.

I wish all of you a very merry Christmas and a Happy New 'Ear.

Happy Birthday to me...happy birthday to me...
03 November 2012

Sorry for the lack of updates everyone, its been a super busy few weeks. I had a phased return to work following my operation and I'm now back full time. I'm in a different office so a slighter longer commute and less time to blog!

Also it was my birthday so I was celebrating that. I used some of the money I was gifted to purchase new songs on ITunes. I'm really making the most of my new hearing and listening to new songs. I never really bothered with songs that weren't from the 80s or 90s, songs I could remember before my hearing got worse. Now I'm singing Gangnam Style! Heyyyyyyy Sexy Lady!!!

I also saw Skyfall twice. Skyfall is the first film I've seen post implant. Previously I would go to a film and either spend the majority of it going "what did he say?", "why is she doing that?" or get the full script from my husband afterwards. Unless it was a film of a book, in which case I'd read the book first! (Any Edward Cullen fans out there??)

Skyfall was amazing. I wasn't expecting to enjoy it so much, I just went along to humour my husband who is the biggest Bond geek you'll ever meet. I could hear the majority of the script, I could follow what was happening and I didn't need to ask any questions! I went back to see it again I enjoyed it so much!

I had a visit from Hearing Dogs for Deaf People last week. They wanted to look over my new office to see the environment in which the dog will be working. Alex from Hearing Dogs spoke to some members of staff to find out if any had allergies and checked where the dog would be exercised.

Hearing Dogs are registered recognised assistance dogs trained to alert their deaf owners to a variety of different sounds such as door knocks, fire alarms, telephones etc. The waiting list is currently at 5 years due to supply and demand, I have been waiting 4 years now.

Alex feels I shall be matched next year and believes I will have a non moulting dog due to allergies amongst my colleagues.

It was good to get an update on my position on the waiting list and it was beneficial for my colleagues to find out more about the work of Hearing Dogs for Deaf People and how the dog will assist me.

For more information on the work of hearing dogs, visit www.hearingdogs.org.uk

Six weeks on
18 October 2012

It's been about 6 weeks now since I got switched on and it feels much longer. I've adjusted really well, in fact sometimes I forget I only have a cochlear implant in one ear! 

It's improving all the time. I can hear music playing when I go to the shopping centre, I can hear the self service tills speaking to me, I can hear parts of a conversation taking place behind me, I can even hear a voice at the other end of the phone that someone else is using! Excited much?? 

I learned an important lesson at my BSL class though. I arrived straight from work. The battery on my speech processor had died. I had forgotten to keep a spare in my bag and had no time to go home to get one, before going to college. I thought "oh it doesn't matter, its sign language, I don't need to hear". 

When I arrived, I saw my tutor at the reception. She is deaf and she flagged me down. She asked me to interpret for her. She knows I am deaf but I am a better speaker and lip reader than she is, plus she likely thought that with my 'new hearing' I'd be able to help her. 

I felt so bad. Of all days to ask me to help her, it was the day my battery had died! I didn't tell her though as I was embarrassed and did not want her to struggle. Fortunately we managed to have a conversation with the receptionist using lip reading and my basic sign language. 

In the class, I actually found that week harder than other weeks, despite not being allowed to use our voices. It seems even with other deaf people and in a 'no sound' environment, hearing is still important. 

So I learned to always have a spare battery with me, and not to make assumptions about deaf communication!! 

At the end of this month, Hearing Dogs for Deaf People are visiting my workplace as I have changed offices and they want to check the environment the dog will be working in. I'll blog a bit about that as I'm sure lots of readers would like to know more about this charity!

Four programmes
05 October 2012

Yesterday I had my 1 month check up at the hospital. I was in a much better mood this time as the beeping was gone and everything sounded much more normal. I was much happier this time around which the clinical scientist commented on! 

She not only adjusted my current maps (or programmes as I call them) but gave me two more maps. The new ones are 'focus' which is ideal for one to one situations, and 'music' which is self explanatory and I absolutely love that one. I'm having a ball listening to my favourite songs on my Iphone and I really want to go to a concert and try it out! 

I also asked for a hearing test. She told me that would be at 3 months but I think I must have looked disappointed enough for her to give in and give me a very quick test. The audiogram showed my hearing with hearing aids compared with my 'new' hearing with my cochlear implant. There's been a HUGE improvement in just 4 weeks. I am hearing things that are quiet, at about 20 decibels, and I'm almost within the 'normal' hearing band. I'm delighted! 

I am now back at work and finding it mostly okay but its strange having the radio playing in the background and being able to follow a group conversation! Its quite tiring too because of all the noises all at once but I'm really happy and I feel that it has boosted my confidence too. 

My next appointment is not until around December, so I think I might fill the time by telling you some general deaf awareness thins in my next few blogs. If anyone has any particular questions then ask away!

Three weeks post switch on
18 September 2012

My speech processor. I am wearing a 'snug fit' which holds things in place.It's now nearly 3 weeks since I have been switched on. It feels like longer, which I suppose is a good sign! The beeping has nearly gone, so yippee! 

I returned to the cochlear implant centre six days after switch on and I was in quite a bad mood. The beeping and squeaking was driving me crazy and I had told myself I would refuse to leave the centre still beeping! Unfortunately I did! My audiologist explained I had to be patient and give my brain more time to get used to all the different noises. It normally takes longer than six days for the beeping and squeaking to go. I was quite upset. She had planned to undergo a hearing test but skipped this for another day as I was not really in the mood for it. 

She did go through all the channels again, and ask me what I found too loud or too quiet, and made some adjustments. A few days later I started to notice the beeping was going away so I cheered up! I think this new hearing journey is going to be full of lots of ups and downs! 

I was advised for the next three weeks to spend one week on programme one (everyday), followed by programme two for the next week (noise), then for the third week before my next appointment I was to continue with the programme I liked best. 

Both programmes have advantages and disadvantages. I have found that 'everyday' is best for background noises and I am more likely to hear things I have never heard before with this programme. Music sounds great, but the lyrics are too quiet. I have the same problem with voices, it is like everyone is talking in whispers.

With programme two, which is 'noise', voices are louder but very robotic. All other noises are quiet and I do not notice anything new. I feel this programme is best for noisy situations where you want to cut out the background noises to hear what is being said. 

I have to switch to my 'favourite' programme next week and I think I will go with programme one - 'everyday' - because I'm finding programme two far too robotic. I will report back on this and see if it can be re-tuned and improved. 

There are four programmes in total. The other two programmes with my implant are 'focus' and 'music'. I think these are more or less self explanatory. I will not receive these programmes until later although I do have a show to go to in a few weeks so I might ask if I can get 'music' sooner. We'll see. 

I've been trying hard to 'train' my brain to get used to different sounds and recognise different things. My preferred training is to listen to music. As mentioned above, musical instruments sound great on programme one but lyrics come through better on programme two and I can recognise songs without using the Tune Wiki app (which provides lyrics). 

I've also tried audio books but I am not having much success. I keep losing my place and it is too quiet on both programmes. 

I've been trying to use the phone also. I can hear people speaking which is fantastic progress, but I cannot always make out what they are saying beyond 'hello' and 'how are you?' 

So in the past three weeks I've gone from being a moody cow (sorry everyone!) to feeling more positive. What will I hear next time I update?

Switch on day!
03 September 2012

Watch a short subtitled video of me at the hospital on my switch on day!

 I entered a small consultation room with my dad and a video camera that Hearing Link had given me. The physicist (the guy who put the 'electric drill' through my ears a while back!) set the cochlear implant up. He explained he would first go through 22 channels and I would hear beeping each time. He would increase the volume of each programme until it reached a level that was uncomfortable. 

The beeps were very strange at first. At the lowest volume, I could 'feel' them, rather than 'hear' them. As he increased the volume, it began to sound a bit more normal. I wasn't aware there were 22 channels so it was quite a long process. 

Then he told me he would switch the implant on and I would hear pretty much everything. Wow, what a lot of noise! I clutched my hands to my ears. TOO LOUD! 

It was all beeps, and crackles. There were also squeaking and swishing noises. The physicist spoke - squeak SQUEAK squeeeeeeeak beep? - if I hadn't been lipreading him, I would have had no clue what he was saying. 

Then there was a strange beeping and squeaking. Where is it coming from? Oh its stopped now...hang on, is that my voice?? 

Then there was a continuous beeping. No one was speaking. The physicist grinned and pointed upwards. The fire alarm was flashing. I had heard the fire alarm test! It was loud! 

Its now three days post activation and I'm still hearing beeping and squeaking! Nothing sounds as it should. It's very annoying but I know it won't last.  

In a way it is also good because I'm hearing things beep and squeak when before I hadn't even known it made a sound - scratching my head, my jewellery jangling, footsteps, car indicators, the tapping of my dad sending a text message, my breathing coming out in a big 'whoooooosh'... 

I'm trying to avoid busy environments because it's just a barrage of squeaks and beeps. When I'm home alone, it's a lot easier to tell where the beeps are coming from! 

I'm also getting really really tired and getting lots of headaches. The temptation to take the speech processor off is huge but I have been told not to, and I won't, because I need to get used to the noises and it will never start to make sense unless I bear with it. 

I was given two programmes on my Cochlear Implant to start with - programmes one and two. I'm currently on programme one and I've to switch to programme two at the weekend. I hope the beeping will go away when I do. I'm getting rather beeped off!  

I go back to the Cochlear Implant Centre next week to report back and get some more adjustments. I will have to return several times in my first year and hopefully after each visit, things will start to sound gradually more normal!

Side effects
28 August 2012

Here's me talking about my implant - after surgery but before switch on.

The night of my operation, I was trying to read my Kindle but found the words were all blurry. At first, I thought that perhaps I was tired, or the lighting was not good, but I realised it may be a side effect of the operation. I spoke to the nurse and she said this was normal and would pass. It did pass in about 24 hours. 

The day after the operation, when brushing my teeth, there was a bit of blood. I started to cough up a little over the next few days. The nurse advised this was due to my having a breathing tube down my throat. The blood stopped after about a week and it was not much, very little.  

My bandage was removed two days after my operation and the scar was left unbandaged to heal itself. This is how it looked - see bottom photo. So little swelling or redness. My surgeon is a genius! My mum was also very relieved. She was expecting to see a huge scar and a half shaved head!

(Some surgeons (especially abroad) tend to enter the head higher up with bigger scars (and staples rather than disposable stitches) and those pictures do have more bruising. However, in the UK, and in my case, entry is behind the ear and its much neater. Some of my friends have reported similar.)

I was able to go home two days after the operation but I was advised not to drive at first as I might feel dizzy.  

I did have bouts of dizziness for about two weeks. I wouldn't say these were extreme, only when I moved my head too quickly or stood up too quickly. I had no problems walking. I had been worried I would look like I was drunk but I was fine!  

I was also very tired for the first week. I slept a lot, especially in the mornings.  

Kirsteen's implant scar - after 1 dayWhen I washed my hair, I made sure I had someone to help me. I put cotton wool in my ear and tilted my head sideways to avoid getting water or soap where the scar was. I also covered the wound with a facecloth. After two weeks I felt able to wash my hair normally.  

Its now three weeks since my operation and I'm feeling much better. The tiredness and dizziness have mostly gone to be replaced with total frustration at not being able to hear anything. My family have been great and very patient, however some of my friends have said "is it working yet?".  

I don't get switched on until next week so I look forward to sharing that with you!

Kirsteen talks about her implant - after surgery but before switch on.

Surgery
20 August 2012

The next morning, I had been told I would be taken down to theatre at about 8.30am. I had not been allowed to eat since midnight and I was starving! 

Two nurses came to see me and take me down to theatre. They checked my identity and asked some general questions about my health. The best thing was when they covered me with warm blankets that came out of an oven type thing. I want one for my house! 

The anaethesist came again and explained I could have anesthetic either via a jag or a mask. As they struggled to find a vein (a common thing when I go into hospital!), and also as I am scared of needles, we opted for the mask. 

I was wheeled into a small room just outside the main surgery room. I was wheeled past my surgeon who gave me the thumbs up. I wasn't too nervous. I felt quite calm actually! 

The lovely nurses held and stroked my hand whilst I was administered anesthetic. The gas smelled strange and my instinct was to take the mask off but I knew I couldn't.  

Then I woke up! I was very alert which I found strange as under past anesthetic I had found waking up hard. However, I was alert and immediately asked what time it was. It was noon exactly, so I would estimate my surgery and 'wake up' took about 3 hours. 

I felt a bit sore and sticky. The bandage was very tight around my head. My hair was covered in some kind of gel and I think this upset me the most out of the whole thing! I did not feel too dizzy at first and when I returned to the ward, I texted my father who came immediately to find me eating lunch and grinning away! 

I should say everyone recovers differently so whilst I felt fine, others may feel more nauseous etc. Certainly over the next few days, the side effects started to kick in! I will discuss these in my next blog entry!

Pre surgery
07 August 2012

Kirsteen says byebye to her hearing aidI went into hospital in the afternoon of 31st July. I was met by a receptionist just inside the entrance and she checked my identity, asked if I had any dietery or religious preferences. There was a funny moment when she asked if I wanted a visit from a minister. What a way to install confidence! 

On the ward, I had visits from the anaethesist, a lady from the cochlear implant centre and my surgeon. The anaethesist explained the process of going to sleep and checked if I had any allergies etc. As I had anaethestic previously with appendicitis, I knew what to expect. 

The lady from the cochlear implant centre brought instruction manuals for my Cochlear speech processor and remote control for me to read through and explained the switch on process to me. Much of the information she gave me I already knew through undertaking research and speaking to other implantees. I told her all about my blog and she took a note of it, so hello if you are reading! 

Lastly my surgeon came and checked how I was feeling. He explained what would happen during surgery including that my hair would be gelled up into a funny hairstyle. I'm so vain, he laughed at my expression! He drew an arrow on my neck to indicate which ear would be implanted and asked me to sign a consent form. I asked if the implant would be 'high up' on my head but he reassured me it would be quite low. 

There was another girl on my ward who had just had her operation. She spent most of the day either sleeping or being sick. This really worried me but I should emphasise everyone recovers differently. 

All the staff on the ward were excellent. They showed me their name badges, wrote things down if necessary, made sure to face me etc. One male nurse was very funny at dinner time. He showed me all the dinner options with a grand flourish - lifting the lid off every option and going 'ta dah!'. He also put on a jokey huffy demeanor when I gave most options the thumbs down. I am such a diva patient! 

I was allowed to have both my Ipad and Kindle with me so I was able to keep myself distracted and keep in touch with my family and friends. I didn't sleep much that night and I was told I would be taken down for surgery at 8.30am. I was not to eat or drink after midnight.

On the right is a photo of me leaving to go to the hospital - and wearing my hearing aid for the last time.

More photos and info to come! 

Off we go
06 August 2012

This is my last blog before my surgery next week. I think I’m more nervous about ‘afterwards’ than the actual surgery. I’m nervous that it ‘won’t work’, which sounds silly. 

I’m excited too. I can’t wait to start hearing things better, trying new things and things I haven’t been able to do for years - like using a telephone. 

I will be in hospital for a few days and it will be 4-6 weeks before my implant is ‘switched on’. I reckon I’ll be very impatient during this time! 

I want to thank my friends, family and colleagues for their support and everyone who’s been commenting on or reading this blog. I hope it won’t be long before I can give you an update on how my surgery went and how I’m feeling.

Questions and Answers
23 July 2012

How did you choose which brand to have? 

I did a bit of research prior to my assessment dates and I felt that Cochlear was the most well known brand and had the best success rate. I did also consider Advanced Bionics as other recipients had said this was the most 'water proof'. However, on the assessment day I liked the look of the Cochlear brand better. Also, my audiologist advised me that unless someone made a very good case for a particular brand, they would normally choose the brand they felt was best for you. They suggested Cochlear an I was happy with that.

What did they ask you at your health check? 

It was a standard health check where my weight was taken, my chest listened to, my blood pressure taken, blood and urine samples taken. I was also asked if I smoked and drank. It took about an hour overall. 

Why is only one ear implanted? 

It's to do both with funding and the N.I.C.E guidelines (which you can Google). These guidelines advise children should be bilaterally implanted and adults with certain additional disabilities should be considered. Cochlear Implants are very expensive. There are several support groups easily found via the internet if you need further advice. 

What happens during the operation and rehabilitation process? 

During the operation is probably not something I should describe here, but you can find operation videos on You Tube (if you aren't squeamish! Just remember, you are asleep!) 

The rehabilitation process is most likely described on your Cochlear Implant Centre's website or leaflets that they issue you with. It can take 9 months to a year before you are receiving the full benefits of the implant. It will not restore full hearing and there will be several appointments to adjust your implant to get the sound as best as it can be for you. 

Pneumoccal Vaccination 

I was advised that to have the vaccination was up to me, and that they would still go ahead with the operation if I did not have it. My centre advised me that the risk of meningitis was minimal. However, I decided to have the  vaccination  as I always seem to be unwell - so better safe than sorry!

I had to go to my GP for the vaccination and it felt like I had  been punched very hard! Two days after the vaccination I felt very dizzy and faint. I also had a terrible headache. I had to go to bed and sleep all afternoon however when I woke up I felt perfectly fine. So this side effect is only temporary and I was warned it may happen.

My expectations for my implant
16 July 2012

Well, for the implant to be a ‘success’ for me, I would like to be able to enjoy music again. It's hard to describe how it sounds now with my digital hearing aids. Sometimes its just loud booming with no lyrics, other times it can sound electronic. It's been like that for years and I’ve avoided listening to music as a result.  

I also hope to be able to use a telephone again. It's been years since I’ve been able to hear anything via a telephone. I have been advised by other CI users that mobile phones are easier to use than land line phones but I intend to try both. 

My fear is that I will lose a lot of sound that I receive via my hearing aids and that it will take a long time to get ‘back to normal’. I also worry that one cochlear implant will not be enough. Would I need two? Would I need to use a hearing aid in the other ear? 

I asked these questions when at the Cochlear Implant Centre and was told: 

  • I will start to see improvements almost immediately but it can take 9 months to a year to get the full benefit of a cochlear implant. 
  • Two implants are normally given to children or to adults with additional disabilities. The centre follows the N.I.C.E guidelines.
  • They advised me not to wear a hearing aid in the other ear for at least 6 months to help me get used to my implant. I was advised some people find they do not like it as the two sounds are very different. Some people on the other hand find it is helpful. 
  • Some implantees enjoy music more, and some do not. Everyone responds differently to the implant.
Information and expectations. Day 2
10 July 2012

Assessment day two was shorter and my husband came with me. We got lost again. Colin, my husband, ignored me when I suggested using the Sat Nav. I was not impressed with him and it was getting closer to my appointment time and we weren’t there yet. Needless to say, he did eventually pull over and switch on the Sat Nav and we arrived with minutes to spare! 

I had to complete a consent form and indicate which ear I would prefer, which brand and which colour. It was agreed on the left ear as this had the better hearing. I opted for the Cochlear Brand in Black. 

I then met the head of department who again checked my understanding and expectations. Then I went to meet one of the surgeons. 

He was a very nice man and very reassuring. He examined my ears and asked some questions overall about my hearing and my health. He explained the procedure to me and advised that he would check the results of all the tests and write to me in about two weeks to confirm whether or not they would be going ahead with surgery. He advised it would take about a maximum of 3 months until surgery with the average wait being around 9 weeks. 

Finally it was back to viewing the cochlear implant and explaining how it would work. I would receive advice on how to use the speech processer when I am ‘switched’ on one month after surgery.

Tests, tests and more tests. Day 1. Part 2.
02 July 2012

That afternoon we went for my CT scan. It was over very quickly. Next I met a doctor who undertook a simple health check. Once that was over it was back to the audiologist. 

I had to watch a video of a man saying several sentences. I had to do this with no sound. I only understood one which was “Clean your house before your guests arrive”. This caused a bit of hilarity as Housewife of the Year I most certainly am not! 

I then had to repeat this exercise with sound but no video. I could not understand anything. I did better with both lip-reading and hearing aids but not brilliantly. 

Lastly I was to listen to a variety of sounds including SH, TH, CH etc and select which sound I thought I was hearing. I got most wrong. These tests were to show how much benefit I received from lip-reading and hearing aids. The video test was a real eye opener for me. It showed me just how deaf I was. 

I had to complete a computer questionnaire where I had to rank where I thought my hearing would be after my implant on a scale of 1-10. This was to check my expectations were realistic.  

Finally I was able to view the different types of Cochlear Implant. My centre offers three brands – Cochlear, Advanced Bionics and Med El. I felt that Cochlear had a better success rate. I opted for black to blend in with my hair. 

It was a very long and exhausting day. I had another assessment day the following week which I will blog about soon. 

Assessment. Day 1. Part 1
18 June 2012

The next day we headed to the hospital for breakfast. I was very impressed when I entered the hospital. It was clean and modern. What was most impressive however was that every member of staff I encountered was deaf aware.

Obviously this is where the Cochlear Implant Centre is based so that explains why they are more deaf aware than other hospitals, but I really wasn’t expecting shop assistants and café catering assistants to each attempt sign language with me (which I don’t actually speak). I thought only the staff in the Cochlear Implant centre would know this.  

The first person I saw was an audiologist. She introduced herself by making sure I could see her name tag. She asked some questions about my deafness in general and did some hearing tests – the push the button ones that I am used to already. My audiograms showed a very low level of hearing. She explained that today I would see the physicist, have a CT scan and have my hearing tested with and without lip-reading. 

The Physician stuck some electrodes on my head. It made me think Back to the Future where Doc Brown tries to read Marty’s mind! I was told to relax and ‘maybe even go to sleep’ as it would take about half an hour. Totally impossible as when the electrodes were turned on, the sensation was like listening to a drill. Not uncomfortable but similar. 

We then went for lunch before more tests that afternoon.

What are men like?
05 June 2012

I had my assessment days over two days at the Cochlear Implant Centre. When my appointment letter came through, it offered April, which was a pain as I had a holiday booked that same week. 

The assessment days were rearranged for May. The letter said it would be for a ‘pre op’ assessment plus a CT scan which made me feel a bit scared. I’d never had a CT scan before but I knew it had something to do with a ‘tunnel’. I felt a bit worried. 

My father came with me. On the way there, we got lost and ended up on some country roads. My dad blamed me for misreading the travelling directions on my Iphone. I blamed him for not borrowing my husband’s Sat Nav. What are men like? There was a bit of bickering but fortunately as the appointment was the next day, being late wasn’t much of a problem as we were staying over in the patient accommodation provided. 

This accommodation was comfortable. It is shared accommodation but we were the only people there that time. There was special smoke alarms provided as well as subtitles already set up on the television. So I calmed myself down by watching Britain’s got Talent and laughing at how Alisha Dixon’s tan made her look just like an Oompa Loompa. 

I went to bed fairly early but didn’t sleep too great, probably nerves. I will blog about how the next day went next week. 

About myself
30 May 2012

I have been deaf all my life due to complications at birth. It’s not hereditary, the rest of my family are all hearing. My hearing loss is progressive. It has been getting worse. I also have bad vision in my left eye. I currently wear two digital hearing aids and lip-read. At work, I have visual alarms, a textphone and an electronic note taker to assist in meetings, lectures and other large groups. At home, I have my husband and daughter around me. 

As I wear my hearing aids from morning to night, I often forget how deaf I am. I had never considered myself as a candidate for a Cochlear Implant and always thought I wouldn’t be ‘deaf enough’ for one. I felt I was managing okay with the support I already have and with my family around me. 

It was bit of a shock when late 2011, my audiologist advised me to consider one and said she would refer me to the ENT consultant. My hearing loss had progressed to the stage where an implant would be enormously beneficial. When I met with the ENT consultant, I was still very sceptical as to whether I would be a candidate. I was still confused and feeling quite emotional and scared. The ENT Consultant’s words were that an implant would make my hearing ‘much much much better’. 

So that was the start of my journey towards getting a Cochlear Implant. I will blog soon about my assessment days.

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After surgery/before switch on

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