Tags: children, CI, neptune, parents, sound in water cochlear implants, water proof, water proof implant
Well, it’s been one hell of a journey to get to where I am now on the hearing front. I haven’t blogged for a long time as I have been busy living. Progress in the last 12 months has not been that noticeable but then I achieved so much in my first 2 years that I’m not sure I can get any better.
I don’t need any maps as I’ve found my sweet spots and when I went back for my annual testing last week they didn’t bother testing me as I’d scored 100% on all the test bar hearing in sound without lips which was 80%.
Any way……enough bragging………lets move on to the interesting stuff.
I have been asked by my hospital to trial the new NEPTUNE from Advanced Bionics!! Now when it comes to taking the kids swimming or going on holiday my heart has always sunk at the thought of not hearing in the water. These days could well be over. The NEPTUNE is the ONLY waterproof cochlear implant device that lets you swim, go under water, shower……….or whatever takes your fancy with water!! How amazing is that!!
I have it for 3 months to trial. I’m due in the pool next week so will update on the swimming etc then but for now it is important to review this for an every day use aswell.
It comes in this snazzy little case
The Neptune (not water proofed)
It ends up half its original size and simply clips onto goggles or swim cap or other accessories such as an arm band that the unit sits in when swimming.
The Neptune (water proofed)
You then have a water proof headpiece that you use (you can see that in the main picture above).
It sounds a bit fiddly and there is the obvious down side of not being able to adjust the volume or programmes while it’s water proofed but this is all out weighed by the fact that it enables children, parents of children and any one who wants to hear in water the ability do so.
Now, in order to review it properly as to whether it can replace the behind the ear CI I have tried wearing it during a normal day. There is a simple answer to this for me……..NO WAY. I would need to clip it to a tie or collar and have a long headpiece cable flapping around getting caught on things.
If I was a lady with long hair then I would be able to clip it up out of the way but even then it would make it more awkward to adjust settings etc.
This makes much more sense for children to use full time as they often have body worn CI’s to start with any way and to able to interact at bath time and while swimming would be so useful.
The sound quality is the usual AB quality. Excellent. The mic is in the headpiece and I did wonder if that would affect sound quality but I have to say it is as good if not better than my Harmony processor. It also has this new function which allows you adjust sensitivity. It works similarly to clear voice but you can adjust it manually depending on your environment. Very useful.
Next stop the swimming pool!! I will update you all then…….wish me luck………it might sound awful!!
Tags: Bionic Ear, CI, Cochlear Implants, Deafened adult, Speech, SSHL, switch on, The future, wind, windjammer
It’s almost a year since my switch on and about 7 months since my last post.
I have learnt to adapt to my CI very well but I still have problems in group or noisy situations. One of the problems I have recently solved seems so simple I wonder if anyone else with a CI has done the same? The problem is WIND! It is a problem that all CI users have and it is really annoying if you are outside on a breezy or windy day having a chat and you are constantly interupted by this gush of wind which completely kills off anything you might hear at that point.
More recently I have been doing a lot of cycling to train for a charity bike ride. I find the wind when cycling really annoying and actually can be a safety problem as traffic noise is harder to hear.
Well, not one to sit back and take it I have been doing some research and it appears there is nothing on the market for AB CI users to stop this wind problem. I cant quite believe it and I am happy if anyone can correct me on this. I have therefore found my own solution and I have been testing it out. Not to be too smug……….but it works brilliantly!!
It’s called a ‘windjammer’ and is a little sponge microphone cover that you see people on TV using on their lapel or tie microphones. I contacted a local manufacturer and asked for their advice. After sending the a picture of my CI they were able to recommend their smallest ‘windjammer’ for me to try. It cost me about £10 for 5 of them and they work brilliantly!!
Now this solution will only work with Advanced Bionics CI’s as they are the only ones with a mic in the ear. You also have to be 100% in the ear mic or you will still get some wind noise from the aux mic on the top of the unit.
Problem solved!!! 🙂
Roll on the summer and BBQ’s and more wind!!!
Tags: Batteries, CI, CI tests, Cornwall, Telephones, Wasps, Water Resistant
Life has been incredibly hectic since my last post and I have been testing my CI t0 it’s max………in more ways than one!!
Progress has been more steady over the last month and I am noticing that others are noticing the improvements more than me! More often than not people are pointing out that I have heard something they have said without me seeing their face. Bonus!! The fact I am not noticing the improvements just goes to show how normal life as a Cyborg is becoming.
My hardest place with my CI is work. Gym equipment, music and chatter all at once is very hard and even in this environment I am being told how well I am hearing people. Environmental noises have been normal for a while now but the battle is still speech. Naturally this is the area I want to improve most on and slowly but surely I seem to be winning the battle.
I went on holiday to cornwall a few weeks ago and was really pleased to hear how well I coped on the beach with the ocean, chitter chatter of people, excited screaming kids and those pesky, thieving seagulls!! Not only are they pinching ice creams they are now running off with people’s shoes!! I half wondered if they might fly off with my CI if I left it unattended at any point!! 🙂
The ocean was as I remembered! Fantastic!! The holiday itself was rather a learning curve for me on the CI front! Advanced Bionics kindly provide us with a little bag for our accessories such as spare batteries and microphones. I use it for my spare battery and my HA just in case I need a back up if the CI were to fail. Well one day I managed to lose my little bag along with its contents so suddenly I was one battery down and without my HA backup. No big loss really but a pain none the less. I hadn’t bought any spare microphones as I didn’t really think about what would happen if one breaks.
Then disaster!! I was playing in a stream with my daughter Lucy when a wasp buzzed round my head and as I swatted it away I managed to swat my CI off my head and straight into the water!! I swiftly fished it out so it had only been there a matter of seconds but still there was real panic of it failing as well as now not having the back up of my HA. I dried it off and tried it back on and it didn’t work!!! Holiday now turning into a disaster!! Luckily I had remembered to bring the dry box provided by AB and after popping it in there for a few hours it started working again!! RELIEF!! 🙂
The AB CI is warranted against water damage so I wasn’t concerned as such about the CI, I was more concerned about ruining the holiday. I have become so reliant on it that facing even 24 hours without it was not something I wanted to comprehend! I was even thinking a 250 mile trip to Bristol may be on the cards to get an emergency replacement!!
Water reistance well and truly tested!!!
Since coming back from holiday I have been practicing more and more on the phone and I’m pleased to say that I am making some great progress. I can talk to my wife quite easily now and it is so nice just to be able to pick up the phone and chat! All this practice culminated in me making a phone call to my Dad on his Birthday and we were able to chat away for over 10 minutes talking about his trip to the Eden project. During the whole conversation I only had to ask him once to repeat something!! I tell you I was floating on air for the next few days after that!!
The phone calls really got me wanting to make even more progress and during my chats on Facebook with other CI users I came to realise that maybe my settings weren’t helping me as much as I realised. The AB CI has two microphones to use. One is the T-mic that sits nicely in the ear and the other is the internal Aux mic which is on top of the unit and more like an HA mic. I had assumed that I was using 100% T-Mic but when I looked into it further I was actually using a 50% mix of both. This isn’t a real problem but if I wanted to make the most of my sound and use of the phone and music through headphones I was going to want to be using 100% T-mic.
I contacted my CI centre and requested an appointment to have a twiddle with my settings and at the same time see if I could get a replacement battery. I was given an appointment the following week which is very quick. Thankyou Southmead, Bristol!! To cut a long story short I went along and had my CI re-programmed and left feeling like something wasn’t quite right. Only when I got home and tried the phone did I realise that I had now been given 100% AUX!! Not happy!! I got my wife to phone and request another appointment to sort it out and they saw me the same day!! Well I flew down the motorway (70mph all the way I promise) and went in to find out what had happened. It seems that the programme was correct but the upload from PC to my CI was not working properly. When we changed the setting to actually say 100% AUX it then changed my CI to 100% T-mic!! Odd but I don’t care. I’ve got the settings I want and the difference is noticeable straight away!!
Music perception is now much better and my wife sounds much clearer on the phone too. A lot of practice with the new settings to go but I can really feel that more and more progress is yet to come!!
Roll on the next holiday in 2 weeks when I will be testing the CI abroad for the first time!! I’m hoping to queue jump the scanners!! Lets hope they don’t fry my brain!! 🙂
Tags: Bionic Ear, CI, clear voice, Cochlear Implants, ear horn, Hearing aid, Hearing loss & Cochlear Implant journey
Since my ‘switch on’ nearly 10 weeks ago I find myself making great progress in the old sound department but with the improvements continuing on a daily basis I am finding I’m forgetting what it was like when I was just using a hearing aid. I get asked by friends if the implant is really that good and I find myself saying………’Oh yes……….it’s 500 times better than the hearing aid’! I should add that I can only comment on my own experiences and remind you that before my CI I was totally deaf (unaidable) in my right ear and profoundly deaf in my left ear.
So………..why is the CI so much better than the HA?? For me it’s easy. All I have to do is take my CI off and put my HA in. Voila!! I can now hear sod all apart from loud tinny sounds that I have to really concentrate on to work out what it is. If I was to have a conversation now with just the HA I would have to turn my ear towards that person, screw up my eyes and really focus on the mouth of that person…………..then I would have to say………’sorry, I didn’t quite get that………..what did you say’?
I hate the sound of my HA so much now and the quality of sound that I get from it is so poor it actually messes with my CI sound!! I therefore have ditched the HA………….not quite for good……..as I am going to try to get it re-tuned next month……….but pretty much forever!!! Yay!!
I think the CI is so good that the only thing I can think of that HA’s are better than CI’s with is the batteries!! That’s it!! The CI out ranks, out performs and out thinks the HA on every other level!!
So, what am I able to do now that I couldn’t before?? The list is endless and everything I am about to mention I was not able to do or hear with the HA:-I can hear simple every day sounds like the Kettle, Microwave, Fridge beeping to tell me I’d left it open, a knock at the door, traffic noise, birds singing, a bumble bee buzzing nearby, the squeak on the kitchen door, my cats meowing and purring…………as I said, the list goes on!!! Environmental sounds are pretty much normal!! Now the harder stuff to master!! I can listen to my MP3 player and enjoy 80% of the music I play! I can listen to a Harry Potter audio book and make out 99% of the words! I can hear the TV and use the subtitles (some programmes differ) only as and aid not a requirement! I can use the mobile phone for simple conversations with familiar voices! (I still have a lot of work to do on this!) In the last week I have found that I am able ear wig on conversations in the car and join in the chat too, whilst sitting in the front and hearing what was being said in the back seat!! I have also been able to use the phone to hear and answer security questions about my bank account before having to hand the phone back to a member of the bank staff to finish the conversation for me. That was tough but satisfying at the same time. I have been able to attend a social event with loud music and have conversations with people without struggling too much!! I did have to stop one person and asked if they were from Ireland…………as I was struggling to make out her words!! At least I could tell where she was from!! All in all the CI IS 500 times better than the HA if you have profound hearing loss!! Remember, all mentioned above was impossible to achieve with just the HA!!Other pro’s are it is so much more comfortable to wear! No more horrible plastic ear pieces and no more horrible feedback and buzzing when laughing or eating!!I have the Advanced Bionics and I’m glad I have chosen this model over the others. The sound quality at the moment is equal to if not better than the MedEl or Cochlear makes (although this is a contentious subject with users of the other makes). All implants work well and whichever anyone chooses will do well for them. I prefer the AB for other reasons. The AB has a microphone that sits nicely in the ear canal and uses the natural shape of the ear to capture the sound and send it into my brain. This also means that when using a telephone you can just put it to your ear like a hearing person would rather than hover it over the mic at the top of the ear. I also like the fact that I have 4 rechargeable batteries, rather than throw aways, that last between 8 and 12 hours a day. As long as I remember to charge them and carry a spare with me!!! The AB also has a clever bit of software called ClearVoice which acts to soften harsh sounds and make everyday listening even more comfortable.
A slight word of caution………..the CI is never going to be perfect and I will always need it to help me hear….
Is a Cochlear Implant really that good? You bet your life it is!!
Tags: AB, Bionic Ear, CI, clear voice, Cochlear Implants, loop systems, MP3, tinnitus
Well the 2 weeks since my switch on have flown by. I’ve been so busy with work and social stuff with friends and family that I haven’t had too much time to really think about my CI progress.
The initial switch on was a bit of a disappointment as you may have already read. But in hindsight it wasn’t as bad as I thought and to be able to make out some music on my MP3 player after only 4 hours is pretty amazing. After only 2 days though the volume on my CI had dropped so much that I was really struggling with it on its own as everything I was hearing seemed like a robotic whisper. So I kept using my HA in my other ear and that seemed to boost the volume on both sides by giving me a stereo effect. I definitely was enjoying that. First time to hear something out of both sides of my head in over 10 years!! 🙂
The external unit itself is very comfortable on my ear but I was having a problem with the cable sticking out and getting it caught on clothing as well as offering something tempting for my girls to grab hold of!! I have over come this problem by wrapping the cable around my external unit which shortens the cable perfectly to attach the magnet. No more sticking out cable!! Yay!!
I went back for re-tuning and a volume increase after 7 days and boy did I need it. This time my volume was increased a huge amount and my IDR was put up from 60 to 80. (Which apparently after only 7 days is pretty good). I also got them to take off my loop setting and go with normal on setting 1, clearvoice medium and high on settings 2 & 3. The loop setting was pointless as my recognition of speech was still so poor it was a waste of a setting.
After my re-tuning I found the next few days a real struggle. Everything was so much louder and distorted that it was not fun. Gradually though after 2 to 4 days the sound has become much more comfortable and dare I say…….NORMAL!! Yay. I still find speech really tough but people are sounding less robotic and more how I remember them. My little girls however are still like little robots……but sounding like very cute little robots………most of the time anyway!!
I have been using my CI more and more without my HA since my re-tuning and it has been fine most of the time. Sounds are becoming normal. I find when I have my HA on too I get two different sounds entering my head too. Quite amusing I think at the moment. A text message on my phone comes through in two different tones!! It could be confusing I suppose but I’m riding along with it and enjoying it most of the time.
Social situations are still very tough and this is what I miss so much. The world cup is on and we are having BBQ’s round at friends houses for the games and I miss joining in the banter with my mates & slagging off the commentators because they don’t know what they are talking about. Having said that though my mates are being really good with me and not getting bothered when I say pardon or sorry, I didn’t get that!! (Until they get drunk that is and still think it helps to get closer to my ear for me to hear them rather than letting me see their faces!! No names mentioned Stu 🙂 )
I mentioned sounds are becoming more normal now. Well, I have to say they are generally. I still can’t make out the radio or the TV but other than that I reckon it’s nearly all there. I noticed a squeak on one of our doors the other day and asked my wife when that had started. ‘Months ago’ was the reply. That’s nice……..squeaky doors again!! Yay. Other sounds are the birds chirping, the owl in the evening twit twooing, indicators in the car, aeroplanes and helicopters overhead, branches rustling in the wind, cat meowing and purring………the list goes on!! In fact, when I take the CI off now and just wear the HA the sound I hear is so poor it just shows how good the CI is. I’m still frustrated by speech but I have to keep reminding myself it’s only been 2 weeks!!!
A quick mention of my tinnitus. It’s still there 😦 but hardly noticeable when I’m wearing the CI. As soon as I take the CI off it’s there straight away with that lovely washing machine sound!! Ah well, at least it’s gone most of the time. Maybe that will calm down in time too??!!
To sum it up………my hearing is loads better, I’m frustrated by speech and social situations, my girls are still robots although other people are sounding more like themselves again, environmental sounds are pretty normal now, music on my MP3 is about 70% now (compared with zero before!) and I’m going back to the hospital in 2 weeks to get re-tuned and tested again.
I’ve had my doubts about the CI but I’m definitely pleased I got it done!! Roll on the next few weeks of improvement!! 🙂
Tags: BBC See Hear, Bionic Ear, CI, CI operation, Cochlear Implants, Cyborg, Hearing loss & Cochlear Implant journey, switch on, tinnitus
Today is my first full day as a fully fledged Cyborg. It has been a long hard journey to get to this point today and I wish I could say that it is all smelling of roses right now………but I can’t……….not yet anyway!
Don’t get me wrong, I’m still very positive about the whole Cochlear Implant journey but today it feels like my hearing has taken a step backwards in some respects as well as a step forward in others. For someone who has had normal hearing for most of my life it has been hard to keep my expectations in check. No matter how hard you tell yourself not to expect much, you can’t help but have that secret hope buried deep down that suddenly everything will be normal again. I’ve told so many people exactly that, that maybe I forgot somewhere down the line to tell myself!!
For those of you who don’t know, this is what happens at ‘switch on’.
Firstly you are attached with your external unit. In my case I have the Advanced Bionics. You sit there and are asked to listen for some beeps and to tell them to stop turning it up once the volume seems loud but comfortable. They did this for all the 16 electrodes in my head. I was pleased to say that I could hear them all. Although it was the strangest sounding noise I have ever experienced. I can only describe it as ‘controlled tinny robotic sounding tinnitus’. Not horrible tinnitus but right inside the head where tinnitus seems to lurk none the less.
Then, once the levels have been set, the audiologist switches you on. Sound immediately flowed into my right hand side in a very mechanical way. Exactly what I had expected or what I thought I’d expected because this is something that, no matter how you describe it or read about it, you just cannot understand until it actually happens to you. Someone I was talking to today compared it to child-birth!! Before all you ladies start sending me evil messages it was only a comparison in the fact that you can never know what child-birth is like until you actually experience it for yourself!! I for one will stick to the CI switch on thank you very much!!! 🙂
So. What can I hear now? Well, on activation I very quickly began to pick out voices. Not very clearly and nothing I could really understand but voices none the less. Everyone did and still does sound like they have been sucking on helium balloons before they speak!!!
Voices are definitely the hardest to work out. I can however hear random things like…..me typing this……..and the kettle and microwave. I could hear the radio in the car a little and managed to work out a song that was playing. You’re the one that I want……ooh……oooh……oooooh!! 🙂 Yes it was dodgy local radio but I haven’t been able to control the radio for a while!! I’m looking forward to getting talksport back on soon!!!
I am strangely finding that I can pick out music better than expected. I came straight home with my box of gadgets you get with the Implant and went straight for the MP3 player. Plugged straight in and managed to make out Pink Floyd and Red Hot Chilli Peppers!! That was only after 2 hours activation!! I haven’t had the chance to try it again yet today but I’ve been told not to rush it as I don’t want to overload the old brain.
I have been back to work today and found I need to use my Hearing aid in the other ear to improve my communication. Again, I have been told to try to use my CI with and without the HA so I am sat back at home now with just the CI. I must admit though it is tempting to use both as suddenly I find I’m hearing in stereo for the first time in over 10 years!!! I like that a lot!!! Even though it is still mainly noise I’m hearing………at least it’s in stereo!! 🙂
Did I start this post sounding a bit negative?? Now I’ve just read what I have typed I realise that actually it has been a really positive switch on!! See what writing a blog does for you!! I am already finding that I want more volume but will have to wait until next Wednesday when I go back for a re-tuning session. Patience Graham!!
Oh…….yeah……..I can hear the dial tone on the telephone!! I rang my wife on it and could clearly hear that she said something…………no idea what………..but hey………..that was only after 4 hours switch on!! See this is getting better by the minute!!
Right. I’m waffling now so I’m gonna sign off with the best part of all. I can hear my little robotic girls!! They will sound more normal in time but hey ho………one step at a time!!! 🙂
Tags: CI, Cochlear Implants, Deafened adult, magnets, switch on, tinnitus
Well it’s been nearly two weeks since my operation and I’m about to go back to work. Since my last post I have been healing well and the innitial dizziness has subsided. I have to say the pain has been minimal and the worst part for me has been the increase in my tinnitus. The best way to describe the noise I had in my head was………when I could hear………….standing on a station platform and the noise you got as the train pulled in. Loud and unpleasant. Thankfully now that has gone and I am back to a reduced constant washing machine on spin cycle sound that, although annoying, is far more easy to tune out.
It’s now just 2 weeks to my switch on and I have come across a great little video which describes how the CI works. I have done lots of research on the subject so I know exactly how it works but I find it quite hard to describe it to thers sometimes. Have a look and see what you think.
Not much more to say now until my switch on. I’m off to see if I can get any fridge magnets or bottle tops to stick to my head 🙂
Tags: Access to Work, BBC iplayer, BBC See Hear, CI, CI operation, High frequency hearing loss
Quite a lot has happened since my last post and it has all been quite hectic.
Firstly……..I got the good news I wanted and have been given the go ahead for the operation. Woopeee. I go into hospital on the 12th May and have the operation on the 13th May and hopefully I will be back home on the 14th May. Assuming everything goes well and I heal well I should be ‘switched on’ between 3 to 6 weeks later. I can’t wait!! Good timing for the world cup!! 😉
A lot of people I have been talking to about it are assuming I will come out of hospital and be able to hear again!! Er, no!! The op is to implant the device that will send the sound to my cochlear. I still need to have the external processor ‘switched on’ to allow the clever stuff to happen. Remember, I will always be deaf. When I sleep at night and have a shower etc……..I will not be able to have the unit on so I will not be able to hear. As long as the device works when I wear it I think I can cope with that!!! 🙂 If you want to have a listen to hear what I can hear at the moment then have a look at this link. I showed it to my wife and she said; ‘they’re just mumbling……I cant work out anything they are saying!!’ Welcome to my world 🙂
On my return from the hospital I had a letter in the post from Access to Work allowing me a budget to improve the acoustics in my gym and therefore improve my ability to hear my clients. Great news. I honestly don’t think I could have kept my business going forward without their help. If you work for someone then get your employer to contact them because they could help with all sorts of assistance in improving your ability to work. Likewise if you are self employed contact them yourself ( I got my wife to phone) and they will assess you to see if you qualify for help. You don’t know if you don’t ask!!
Next in my crazy world came my starring role on the BBC’s See Hear Programme. I was kind of dreading this but they actually did a really good job. If you missed it then have a look on the BBC iplayer. My eldest daughter, Lucy, seems to want to get on camera as much as possible 🙂
Now I have to sit around (chance would be a fine thing!) and wait for my operation. Two of my online CI buddies have just had their operations and I am really looking forward to their ‘switch on’. As part of my research I wanted to be as prepared as possible and one of them sent me a link to an actual operation!! So I watched it. At the time I wished I hadn’t but now I have had time to take it all in I’m glad I know what exactly they will be doing to me. Have a look if you want. After the jump click on high resolution as it seems to play better. Happy viewing. Click here for the Implant Operation.