Today we did the same listening tests with the speech therapist, which we did before I had the op, more than a year ago. So here are the results!
Lipreading & sound: pre: 88%; today: 93% (I notice here that it is very helpful to hear the fricatives better)
Sound only (short sentences): pre: 2%; today: 30% (these were short sentences where I heard a word here and there; for example I heard 'mother' and 'baby' in the same sentence)
Sound only (single words): pre: 13%; today: 21% (this was more difficult as it was single words out of context, I think I rarely heard an entire word but identified some phonemes)
It was considered I had done really well based on the tests. In the chats I had with the speech therapist and audiologist I emphasised that the main difference it had made was in being more connected to my environment and picking up on things, for example this week for the first time i heard the shop assistant say 'would you like a bag?' while I was looking down at the counter, picking up my shopping. Of course I identified the sentence as it matched the context and I recognised the pattern of speech. Out of context I don't think I would have understood.
I then completed the quality of life questionnaire. This went from 36% last year to 40%, whereas the expectation for most people was that it would jump to 60%. We put the low score down to the fact that most of the questions were not relevant to me, e.g. 'do you find that the cochlear implant has helped you to hear your friends and family on the telephone?'. Most of the questions would be more relevant to deafened people, for whom the transformation would be much greater as they regain lost hearing.
We did a hearing test with the audiologist, in which I heard sounds in the 35 to 45 decibel range. The audiologist would like me to come back in February to crank up the settings a wee bit to see what that does, although she says most people are comfortable with the settings I have now. She would like to leave them as they are for a further three months as I am comfortable with them. When we are looking at the curve of the current levels which are fed to the 16 electrodes, mine at the moment is like a bird flying, it falls slightly at the ends and in the middle. The current to each electrode will vary depending on each person so no-one has an identical curve. Quite early on the audiologist asked me to look away from the screen when setting each electrode, as I would unconsciously try to have each electrode set on the same level as the preceding one so as to obtain a harmonious curve!
I forgot to post on the 17th of October; that day the remaining two electrodes corresponding to the highest frequencies were switched on; at first everything was slightly more high pitched but not too uncomfortable and I soon adapted.
Friday, 14 November 2008
Sunday, 7 September 2008
Marg
I just wanted to add a word to say an important friend died yesterday. Marg was a close family friend, she'd known my mother since she was 17 and was the person who noticed I was deaf when I was a baby. She had four children of her own and noticed that when she held me I was not responsive to sound as other babies were. No-one else had noticed as I was very alert and observant.
listening to Ned Kelly
Saturday before last I finally went to Hammersmith library and borrowed the 13 CDs of the True History of the Kelly gang by Peter Carey. I play the CDs on the computer with the speakers on and can follow the voice easily, reading the book open in front of me. It's a nice feeling to be able to do that so easily. I wonder how I would have done with the hearing aid but I didn't try so can't really compare. Still I suspect it would have been difficult, or more likely I would not have been able to do it. My friend Graham pointed out that it was narrated in an Australian accent, and that he could not reconcile an Australian accent with a piece of literature!!! My Dad asked was that Peter Carey narrating, and actually it's some guy called Gianfranco Negroponte, sounds very Aussie to me. Well ok, my aunt used to live in Leichhardt which is one of the the Italian districts in Sydney. And we have a famous Australian called David Campese. And people in Sydney are very fussy about their coffee. So it's pretty Australian really.
I didn't find a picture of what this John Francis Blackbridge, or Jean-Francois Pont Noir looks like. But it seems more real listening to the book as opposed to reading it. When there's the voice of a different character, the voice changes, when there is urgency there is urgency in the voice. The narrator reads at a certain pace, you pause with it. All that makes it more real.
A while back I was on the tube, the train stopped before Earl's Court. By chance I was looking at the electronic screen and as I read the display scrolling past, I heard exactly what I was reading ('this train will stop here for a few moments' - although we were between stations and it didn't say why!). Then I realised that I could pick up the announcement before the doors shut ('the doors are closing', or something, then wheeee... clong! as they shut). I didn't notice it today though, or think of listening, so it must be that I was paying attention on that day. Watching telly is a listening excercise too, as I read the subtitles and listen at the same time so I can put the two together. There are a lot of fricatives coming through: 'ch', 'ph', that sort of thing, so it sounds a bit like loud whispering at times and I really wouldn't be able to make any of it out without the subtitles.
Because the hospital had run out of the dark coloured processors to match my hair at the time of the theft, I'm temporarily wearing a processor that has black (for dark hair), white (for white hair) and gold (for blond hair) parts. My friend Kate joked: oh, did they pimp yo aid? But it's still hidden under my hair and I'm not bothered.
I didn't find a picture of what this John Francis Blackbridge, or Jean-Francois Pont Noir looks like. But it seems more real listening to the book as opposed to reading it. When there's the voice of a different character, the voice changes, when there is urgency there is urgency in the voice. The narrator reads at a certain pace, you pause with it. All that makes it more real.
A while back I was on the tube, the train stopped before Earl's Court. By chance I was looking at the electronic screen and as I read the display scrolling past, I heard exactly what I was reading ('this train will stop here for a few moments' - although we were between stations and it didn't say why!). Then I realised that I could pick up the announcement before the doors shut ('the doors are closing', or something, then wheeee... clong! as they shut). I didn't notice it today though, or think of listening, so it must be that I was paying attention on that day. Watching telly is a listening excercise too, as I read the subtitles and listen at the same time so I can put the two together. There are a lot of fricatives coming through: 'ch', 'ph', that sort of thing, so it sounds a bit like loud whispering at times and I really wouldn't be able to make any of it out without the subtitles.
Because the hospital had run out of the dark coloured processors to match my hair at the time of the theft, I'm temporarily wearing a processor that has black (for dark hair), white (for white hair) and gold (for blond hair) parts. My friend Kate joked: oh, did they pimp yo aid? But it's still hidden under my hair and I'm not bothered.
Monday, 18 August 2008
stolen processor
Unfortunately my bag was stolen from the beach in Bournemouth last Sunday, with the processor in it. I went down for the day with my housemates David and Laura. We left our 3 backpacks and towels on the beach, squeezed our 3 wallets into Laura's tiny shoulder bag and went for a walk along the beach. On our return the bags were gone. We'd left them in front of the lifeguards' hut, in an area surrounded by people. It was probably naive of us in retrospect as after all Bournemouth is a big city, adjacent to the beach. The annoying thing is, I did think of trying to fit the small brown hearing aid case I carry it around in, into Laura's satchel. There didn't look like being room and I was partly worried about it getting wet or getting sand in it and thought that the inside pocket of my back pack was the safest place for it..which it wasn't.
It being NHS property, I am not liable for it. The hospital made no fuss at all and sent me a new one in the post, to my work. They don't have any insurance on it, and it isn't covered by my travel insurance as it was only a day trip. I wonder how much money they lose through lost or damaged processors. I picture 3-year-olds tossing their processor into flower beds, but never imagined I would lose mine. Oh dear.
Not only was the processor in my bag but so was the hearing aid which I wear on my right ear. So I had to report that to my local hospital as well. I didn't go there until Thursday, as it was a busy week, and I had the hearing aid I used to wear on the left/implanted ear, so on Monday I went to work wearing it on my right ear. When I first put in on I thought, wow, I can hear much better with this than I could with the other hearing aid. But then I got tinnitus, a loud ringing noise in my ear. I was on my bike and, startled, looked around for an ambulance or police car but no sign of any. The ringing lasted after I turned the aid off so I knew then that it was tinnitus, and put it down to the settings being to high for that ear to tolerate. It died out and when I wore the hearing aid again in the office it was ok - it must have been the traffic noise that triggered it.
Interestingly, for the next 3 days I felt a sense of relief, as I didn't have to put up with the bothersome loud noises the processor would pick up: phones ringing, people chattering, the TV, sheets coming out of the printer like machine-gun fire. Then I noticed that I wasn't picking up the sounds that were actually useful to me either: the sound of my manager's phone, mobile, voice from behind the partition facing me. That made me realise there was more of an improvement with the processor than I had thought.
On Thursday the new processor arrived and putting it on was a shock - it was like putting a radio on at full blast with lots of static. But I have got used to it again now. The process of screening out the background noise is just taking me time, hearing people have had a lifetime to do that. On the same day I dropped in at the local hospital and they transferred the settings that were on the stolen hearing aid to the one I am using now. But I still experienced tinnitus so have chosen not to wear it at all for a bit. I'd normally wear it just on the bike journey to work and back, switching to the processor as soon as I was off my bike. The reasons being a. the processor would pick up both near and distant traffic, making me feeling stressed out with all the noise, as if I were contantly pursued by cars, b. I'd worry about the processor falling off onto the road, and c. I have scraped a bit out of the shell of my bike helmet but it still pushes the magnet about a bit, resulting in sound cutting on and off, which is uncomfortable - the sudden switching off makes me feel a sligt, passing sickness.
It being NHS property, I am not liable for it. The hospital made no fuss at all and sent me a new one in the post, to my work. They don't have any insurance on it, and it isn't covered by my travel insurance as it was only a day trip. I wonder how much money they lose through lost or damaged processors. I picture 3-year-olds tossing their processor into flower beds, but never imagined I would lose mine. Oh dear.
Not only was the processor in my bag but so was the hearing aid which I wear on my right ear. So I had to report that to my local hospital as well. I didn't go there until Thursday, as it was a busy week, and I had the hearing aid I used to wear on the left/implanted ear, so on Monday I went to work wearing it on my right ear. When I first put in on I thought, wow, I can hear much better with this than I could with the other hearing aid. But then I got tinnitus, a loud ringing noise in my ear. I was on my bike and, startled, looked around for an ambulance or police car but no sign of any. The ringing lasted after I turned the aid off so I knew then that it was tinnitus, and put it down to the settings being to high for that ear to tolerate. It died out and when I wore the hearing aid again in the office it was ok - it must have been the traffic noise that triggered it.
Interestingly, for the next 3 days I felt a sense of relief, as I didn't have to put up with the bothersome loud noises the processor would pick up: phones ringing, people chattering, the TV, sheets coming out of the printer like machine-gun fire. Then I noticed that I wasn't picking up the sounds that were actually useful to me either: the sound of my manager's phone, mobile, voice from behind the partition facing me. That made me realise there was more of an improvement with the processor than I had thought.
On Thursday the new processor arrived and putting it on was a shock - it was like putting a radio on at full blast with lots of static. But I have got used to it again now. The process of screening out the background noise is just taking me time, hearing people have had a lifetime to do that. On the same day I dropped in at the local hospital and they transferred the settings that were on the stolen hearing aid to the one I am using now. But I still experienced tinnitus so have chosen not to wear it at all for a bit. I'd normally wear it just on the bike journey to work and back, switching to the processor as soon as I was off my bike. The reasons being a. the processor would pick up both near and distant traffic, making me feeling stressed out with all the noise, as if I were contantly pursued by cars, b. I'd worry about the processor falling off onto the road, and c. I have scraped a bit out of the shell of my bike helmet but it still pushes the magnet about a bit, resulting in sound cutting on and off, which is uncomfortable - the sudden switching off makes me feel a sligt, passing sickness.
Sunday, 22 June 2008
One more to go...
Ok so I had tuning sessions on the 4th and the 20th. Both times the settings were very slightly increased and I could notice just small differences, so feel that there is no big news to report apart from steady but very incremental progress. My tolerance of the sounds continues to be good. The sounds do seem to be out of balance as the small sounds I didn't used to hear so well seem magnified and out of proportion, but I expect that in time they will balance out.
At last Friday's mapping session, before leaving, I asked how many more mapping sessions I could expect and to my surprise was told that only one more might be needed, in about three weeks' time. That is a bit scary as it makes me realise that we are reaching the limits of what the implant can do for me, at least in terms of volume. My brain can still do more work and adjustments, so it's pretty much all up to my brain now!
Before mapping I saw the surgeon briefly to review how things had gone since I last saw him, which was in the period where I was experiencing dizziness. He asked whether the implant was better than the hearing aid and my answer was yes and no. Yes because it picks up small sounds, and picks up more environmental sounds, of what is happening around me, and no because the overall sound is not rounded as it was with the hearing aid, it doesn't seem to have as much body, and it doesn't help with lipreading more than the hearing aid, though I still expect that to change with time. I passed on this observation to the audiologist who suggested that the small sounds might be getting in the way and that when the sound gradually became more balanced it would also feel more rounded. I guess this makes sense and hope she's right.
At this point I am realising that I was right to manage my expectations when assured by some implantees who can now use the phone that there was no reason why I shouldn't too, and feel a tad worried that some part of me might secretly be hoping that might be the case. I think that there will be more gradual progress, with sounds falling into place a bit more, and reaching the realistic, official objective, which was for the implant to a. allow me to hear environmental sounds better and b. be an aid to lipreading rather than superseding the need to lipread.
It also crosses my mind that I could simply be a less good implant user than some. My brother Tom's audiogram on paper is almost identical to mine, and yet in practice he seems to hear better so some things can't be measured scientifically. I imagine it follows that Tom would gain a lot more from the implant than I would.
However i keep telling people who ask that it's still early days, that it can take a couple of years to really get used to the implant and make the most of it.
On Saturday I went to the NCIUA summer meeting. The talks were interesting, on topics such as comparison of unilateral and bilateral implants in children, appreciation of music for adult CI users - this focused mostly on deafened adults, making use of their memory of sounds. I made a note on the evaluation form that I would like to see in future topics the case of pre-lingually, or born deaf implantees like me - and there were a few others in the audience too but we are a minority.
At last Friday's mapping session, before leaving, I asked how many more mapping sessions I could expect and to my surprise was told that only one more might be needed, in about three weeks' time. That is a bit scary as it makes me realise that we are reaching the limits of what the implant can do for me, at least in terms of volume. My brain can still do more work and adjustments, so it's pretty much all up to my brain now!
Before mapping I saw the surgeon briefly to review how things had gone since I last saw him, which was in the period where I was experiencing dizziness. He asked whether the implant was better than the hearing aid and my answer was yes and no. Yes because it picks up small sounds, and picks up more environmental sounds, of what is happening around me, and no because the overall sound is not rounded as it was with the hearing aid, it doesn't seem to have as much body, and it doesn't help with lipreading more than the hearing aid, though I still expect that to change with time. I passed on this observation to the audiologist who suggested that the small sounds might be getting in the way and that when the sound gradually became more balanced it would also feel more rounded. I guess this makes sense and hope she's right.
At this point I am realising that I was right to manage my expectations when assured by some implantees who can now use the phone that there was no reason why I shouldn't too, and feel a tad worried that some part of me might secretly be hoping that might be the case. I think that there will be more gradual progress, with sounds falling into place a bit more, and reaching the realistic, official objective, which was for the implant to a. allow me to hear environmental sounds better and b. be an aid to lipreading rather than superseding the need to lipread.
It also crosses my mind that I could simply be a less good implant user than some. My brother Tom's audiogram on paper is almost identical to mine, and yet in practice he seems to hear better so some things can't be measured scientifically. I imagine it follows that Tom would gain a lot more from the implant than I would.
However i keep telling people who ask that it's still early days, that it can take a couple of years to really get used to the implant and make the most of it.
On Saturday I went to the NCIUA summer meeting. The talks were interesting, on topics such as comparison of unilateral and bilateral implants in children, appreciation of music for adult CI users - this focused mostly on deafened adults, making use of their memory of sounds. I made a note on the evaluation form that I would like to see in future topics the case of pre-lingually, or born deaf implantees like me - and there were a few others in the audience too but we are a minority.
Friday, 16 May 2008
Resuming where I left off in mid-January (sort of)!
Today was my first appointment at the hospital since the dizziness got better. I had a discussion with my audiologist, describing how the last few weeks have gone, followed by a mapping session then a hearing test.
We have increased the settings for the first time since I started having balance problems at the end of February. Amazingly, they are still slightly lower than they were at the third mapping which was in mid-January; that was when it became too much and I really struggled to wear the processor. The plan now is to increase them gradually and I have two further appointments booked on the 4th and 20th of June for this (for mapping followed by speech therapy, as before). There will be a few more after that.
On the mid-January mapping the electrodes were all aligned just above the 300 current level; with the mapping I have now they sit just under the 300 line and drop slightly in the higher frequencies (as my tolerance of high pitched sounds is lower, not having heard these well with the hearing aid). On the previous mapping that I had to help me cope with the dizziness the higher frequencies were dropped down even lower; today we increased the higher frequencies more than the low ones to balance them out.
Of the 16 electrodes, 14 are switched on; judging from the x-ray I had after the op the last two were not inserted close enough to stimulate the nerve; I'm told it's quite common not to be able to fit in all the electrodes and that 14 is a good number.
I am very glad to finally resume the mapping and speech therapy at last. 4 weeks ago I was initially very pleased to stop feeling dizzy (again, I can't say what a relief that is!) be able to wear the processor again, then felt that I stagnated over the last 3 weeks. I wear the processor all the time; the only exception is when I am riding my bike; the processor picks up the wind and background noise and that masks out cars coming up behind me so I don't find it useful, and it stresses me out as all the shapeless noise makes me feel as though I were constantly followed by a car! With the hearing aid I cannot pick out the cars till they are right beside me but that's better than nothing and I still rely on my eyesight anyway, looking back frequently, keeping to the left and being generally cautious.
The hearing test was noticeably different from any I have had before as it's in a straight line and doesn't drop off in the higher frequencies. I can pick up sounds in the 50-40 decibel range; we hope to take this up to the 40-30 range; when this happens I should be able to hear speech better.
We have increased the settings for the first time since I started having balance problems at the end of February. Amazingly, they are still slightly lower than they were at the third mapping which was in mid-January; that was when it became too much and I really struggled to wear the processor. The plan now is to increase them gradually and I have two further appointments booked on the 4th and 20th of June for this (for mapping followed by speech therapy, as before). There will be a few more after that.
On the mid-January mapping the electrodes were all aligned just above the 300 current level; with the mapping I have now they sit just under the 300 line and drop slightly in the higher frequencies (as my tolerance of high pitched sounds is lower, not having heard these well with the hearing aid). On the previous mapping that I had to help me cope with the dizziness the higher frequencies were dropped down even lower; today we increased the higher frequencies more than the low ones to balance them out.
Of the 16 electrodes, 14 are switched on; judging from the x-ray I had after the op the last two were not inserted close enough to stimulate the nerve; I'm told it's quite common not to be able to fit in all the electrodes and that 14 is a good number.
I am very glad to finally resume the mapping and speech therapy at last. 4 weeks ago I was initially very pleased to stop feeling dizzy (again, I can't say what a relief that is!) be able to wear the processor again, then felt that I stagnated over the last 3 weeks. I wear the processor all the time; the only exception is when I am riding my bike; the processor picks up the wind and background noise and that masks out cars coming up behind me so I don't find it useful, and it stresses me out as all the shapeless noise makes me feel as though I were constantly followed by a car! With the hearing aid I cannot pick out the cars till they are right beside me but that's better than nothing and I still rely on my eyesight anyway, looking back frequently, keeping to the left and being generally cautious.
The hearing test was noticeably different from any I have had before as it's in a straight line and doesn't drop off in the higher frequencies. I can pick up sounds in the 50-40 decibel range; we hope to take this up to the 40-30 range; when this happens I should be able to hear speech better.
Wednesday, 16 April 2008
less dizzy after 7 weeks
It's been 7 weeks since I started to feel dizzy and thankfully it seems a bit better but I don't want to be excited about it until it's gone completely. Last week I started to wear the implant again and went for a swim and even managed to ride my bike. It's a huge relief to have reached the point where the dizziness is no longer stopping me from doing these things and I can start
again. I wrote to the hospital to report this and will be going back at some point to resume the tuning and speech therapy.
I had a brief meeting with the surgeon after experiencing dizziness for 3 weeks. He suggested it might be a virus, which to me seemed a rather random explanation. He contradicted himself saying the op might have made me more susceptible to picking up a virus that might affect the inner ear and balance organ, then adding that anyone can catch a virus anytime whether or not they have had cochlear implant surgery. He seemed positive that it would get better with time but to me that was little comfort as 3 weeks of being dizzy seemed like an eternity,
especially not knowing where it sprang from or seeing any signs of it improving.
As the dizziness was still there after 5 weeks I emailed the hospital to get another appointment with the surgeon - I felt that they should be testing the problem and trying to get to the bottom of it or at least suggesting some exercises that might help to overcome it. My previous speech therapist that I had when growing up in France was more helpful and suggested some exercises - from what she had to say I gather that if I had had the implant in France the hospital would have tested the balance function in my ear and recommended exercises. Even though the dizziness has ended up improving by itself, had my hospital had the same pro-active approach I think it would certainly have been helpful as knowing that something was being done would have made it easier for me to handle the dizziness and I wouldn't have felt as stressed by it.
I've logged on to the Yahoo user group http://health.groups.yahoo.com/group/ciug2004/ for the first time in absolutely ages and found a post saying I had succumbed to the temptation to go back to the hearing aid which was a bit much! True I have not been very communicative and really should write on the blog more often as that's the whole point of it but I get busy and needed to do it in my own time. I didn't feel like writing every day to say that I was still as dizzy as usual!
again. I wrote to the hospital to report this and will be going back at some point to resume the tuning and speech therapy.
I had a brief meeting with the surgeon after experiencing dizziness for 3 weeks. He suggested it might be a virus, which to me seemed a rather random explanation. He contradicted himself saying the op might have made me more susceptible to picking up a virus that might affect the inner ear and balance organ, then adding that anyone can catch a virus anytime whether or not they have had cochlear implant surgery. He seemed positive that it would get better with time but to me that was little comfort as 3 weeks of being dizzy seemed like an eternity,
especially not knowing where it sprang from or seeing any signs of it improving.
As the dizziness was still there after 5 weeks I emailed the hospital to get another appointment with the surgeon - I felt that they should be testing the problem and trying to get to the bottom of it or at least suggesting some exercises that might help to overcome it. My previous speech therapist that I had when growing up in France was more helpful and suggested some exercises - from what she had to say I gather that if I had had the implant in France the hospital would have tested the balance function in my ear and recommended exercises. Even though the dizziness has ended up improving by itself, had my hospital had the same pro-active approach I think it would certainly have been helpful as knowing that something was being done would have made it easier for me to handle the dizziness and I wouldn't have felt as stressed by it.
I've logged on to the Yahoo user group http://health.groups.yahoo.com/group/ciug2004/ for the first time in absolutely ages and found a post saying I had succumbed to the temptation to go back to the hearing aid which was a bit much! True I have not been very communicative and really should write on the blog more often as that's the whole point of it but I get busy and needed to do it in my own time. I didn't feel like writing every day to say that I was still as dizzy as usual!
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