Sound has been getting more and more painful, and I feel movement again, so on Friday it was back to the Implant team to get my electrodes adjusted again. Rather than the electrodes being switched off, they were able to turn the upper six right down. Which doesn't leave me a very good dynamic range as most of those upper six comfort levels were actually on very soft or just hearing.
I'm so upset about this. Spent Friday afternoon and Saturday in tears, but am gradually accepting it now. What's especially hard is that at switch-on it was all so promising. With all electrodes inserted working and 94% open set sentences in quiet without lipreading in my first week. From there I had only hoped to improve. Instead I keep going backwards. That too would be okay if only it would stop going backwards so I can then work with what I have and go forwards again. Already - just a few days later, I have started to get pain from sounds again.
I can accept that this implant will never be as good as my old one. I knew that right from the word go. But I'm also not about to give up and become a hermit. My extravert personality will not allow me to do that. Instead I want some answers. Answers that I wasn't getting from anywhere else, so I headed to Google, and entered Facial Nerve Stimulation and Cochlear Implants. This is what I learnt from reputable sites such as pubmed and other research sites.
1). Deactivation of electrodes is not normal, nor is it common. This is taken over all implants, over all three brands. I can understand that as most of my electrodes were in good order with the last implant I had before it failed. I think two were turned off because of an electrical problem about half way through it's live after about 7 years.
2). Once five electrodes have been switched off, then the implant should be considered as an 'impending failure' (I certainly hope not in my case)
3). Facial nerve stimulation (FNS) is a known adverse affect in cochlear implants. It is more common with people with cochlear damage or scarring - such as otoschlerosis of the ear, or reimplantation. (This makes sense to me).
4) For reasons unknown, once one electrode starts the FNS and is switched off, it can spread through the electrode array. No one knows why. (This is what is happening with me).
5). I also read of a case study of a 60 yo man. He had a Cochlear Implant, and had 17 electrodes inserted (same a me). He had Otoschlerois of the ear so had some cochlear damage or scarring needing a bit of work to get the implant in the first place (I have some scarring due to the first implant). Initially like me he did really well with the 17 electrodes, but started getting Facial Nerve Stimulation needing electrodes to be switched off. It travelled down the electrode array (like mine) He ended up with 12 electrodes, but only 12% speech understanding without lipreading. (I have much more so far which is good). It was decided to reimplant him (heaven forbid - I don't want this), in the same ear, and after six months, no more FNS and he was back up to 96% scores. (I do want this though).
6). The pain that goes with FNS, I couldn't find much on Google for that - so I still have questions.
I'm Scared though. Very scared. My biggest fear is that the team will say 'there's nothing more we can do for you'. A very real fear as I don't have spare ears. I only have ONE.
Anyway - I'll end with a paragraph of one article I found...
'The most common reason for an electrode to require de-activation was found to be facial nerve stimulation, with poor sound quality and pain also being very common. Other reasons included absence of auditory stimulation, vibration, reduced dynamic range, throat sensations, absence of loudness growth or dizziness. The occurrence of these reasons along the electrode array was examined, more basal electrodes being found to be non-functional as a result of having a small dynamic range or poor sound quality. Pain and vibration were found to occur throughout the array and the more apical electrodes were found to be non-functional as a result of facial nerve stimulation. It is suggested that the electrodes at the basal end of the array are likely to be extra-cochlear or are at the site of the most cochlear damage, whereas the more apical electrodes lie in closer proximity to the facial nerve.'
Monday, October 27, 2008
Thursday, October 23, 2008
Bank of New Zealand (BNZ) - Deaf Unfriendly
I'm incensed. I'm spitting tacks.
On Monday I got a standard letter from the BNZ Bank.
I got onto the BNZ website and in an email, told them I was profoundly deaf, couldn't hear on the phone, but DIDN'T want the increase of credit limit.
Their answer - they couldn't verify my account over the internet so therefore I would have to go into the branch with photo identification to stop the credit limit increase. Well - last time I looked my phone doesn't have a webcam and they wouldn't be able to photo-verify me via phone either.
Why should I have to waste time and money (petrol) to go into the bank to stop something I NEVER requested in the place. Will they give me a credit or petrol voucher? I doubt it.
Shouldn't the letter say if you WANT the increase in credit limit then phone the 0800 number? Rather than the other way around.
And why on earth, in this time of Financial Crisis are the banks offering to put more people into bigger debt? I already know many people with huge credit card debt struggling to pay it off and make ends meet? Then to offer those people MORE? It's insane.
To date - The Bank Of New Zealand will not stop the increase of credit limit on my card despite my pleas to do so. I've requested the contact details of a senior manager in the BNZ to try and sort this out. I don't see why it should be on me to waste my time.
Shame on you BNZ. On the top of the letter your catchphrase was 'Better Off'. If I or anyone else accepted your increase in credit card limits, only the bank would be better off with your high high interest rates on credit cards.
Deaf unfriendly bank - deaf people beware.
On Monday I got a standard letter from the BNZ Bank.
- It offered me a Gold Card with a $7500 credit limit.
- If I didn't want a Gold Card I was then pre-approved with an increase in credit limit with my existing Visa Card.
- If I wanted to accept the gold card, then phone an 0800 number.
- If I want the pre-approved credit limit - do nothing
- If I wanted to decline the pre-approved credit limit - then ring an 0800 number.
I got onto the BNZ website and in an email, told them I was profoundly deaf, couldn't hear on the phone, but DIDN'T want the increase of credit limit.
Their answer - they couldn't verify my account over the internet so therefore I would have to go into the branch with photo identification to stop the credit limit increase. Well - last time I looked my phone doesn't have a webcam and they wouldn't be able to photo-verify me via phone either.
Why should I have to waste time and money (petrol) to go into the bank to stop something I NEVER requested in the place. Will they give me a credit or petrol voucher? I doubt it.
Shouldn't the letter say if you WANT the increase in credit limit then phone the 0800 number? Rather than the other way around.
And why on earth, in this time of Financial Crisis are the banks offering to put more people into bigger debt? I already know many people with huge credit card debt struggling to pay it off and make ends meet? Then to offer those people MORE? It's insane.
To date - The Bank Of New Zealand will not stop the increase of credit limit on my card despite my pleas to do so. I've requested the contact details of a senior manager in the BNZ to try and sort this out. I don't see why it should be on me to waste my time.
Shame on you BNZ. On the top of the letter your catchphrase was 'Better Off'. If I or anyone else accepted your increase in credit card limits, only the bank would be better off with your high high interest rates on credit cards.
Deaf unfriendly bank - deaf people beware.
Tuesday, October 21, 2008
October Implant Update
I've been having more problems with my implant. When I was switched on in early April, it showed such promise. I had 17 out of 22 electrodes working. My test scores for listening without lipreading were 94%, which was so exciting, as back then - as I would get used to the new sounds, it would improve. How wrong I was.
Nearly very month, I've had an electrode switched off. What would happen is that I would be remapped. Then a week or two after a remap, I would notice twitching sensations in various parts of my head. In my temple, or the back of my nose, or in the back of my throat. When this was tested, I would hear very little from it, and even scaling back the volume didn't stop the twitching sensations. So one by one the were turned off. I got down to 14 electrodes.
We decided to try the CIS speech strategy - a higher stimulation rate and often used for partial insertions. This uses 12 electrodes only and for the last 2 or 3 weeks I've been using this. It seemed quite promising as I was getting a better sound - less nasally than it was, but still there, but still not enough clarity for the phone or TV.
Then last week I noticed that a bird sits and chirps outside my window from about 3 to 5pm every day. And I noticed that ever time it chirped, I got a painful sensation from it. So I knew immediately that i was going to lose yet another electrode.
I asked for another appointment, and also asked if I could have an x-ray to make sure no elecgtrodes have somehow moved out of the cochlear. Highly unlikely but for peace of mind, needed doing. I'm still waiting for the results.
My appointment was today. Sure enough - another electrode was twitching in my temple and has been turned off. I live in hope that this will get rid of the painful bird chirps, as I don't think guns in urban areas go down very well! (I've told my cats but they've turned a deaf ear!!)
We wondered about going back to SPEAK - the lower stimulation rate speech strategy at 250hz which I had for 16 years with my old implant before it failed. We wondered if I was simply not coping with the high stimulation rate. So - a new map with the SPEAK strategy was done. It's on Monopolar, and I have a total of 13 electrodes. (It would have been 14 if I hadn't lost that other one today).
Because that electrode still twitched even on the lower stimulation rate, then I suspect it's not the actual stimulation rate that is causing it. We shall see.
A recap on stimulation rates - SPEAK is 250 hz, ACE is 900 hz, and CIS is 1100. with this new implant I was originally switched on with ACE, and recentl went to CIS. Now Im back with SPEAK.
Going back to SPEAK is like being switched on all over again, like I was 16 years ago in 1993. The sound is awful. My voice souds like it's in harmony, but very out of tune harmony. Like my voice has separated somehow and is two voices in one. People sound like they're talking in buckets, very dalek sounding like from Dr Who or robotic sounds. I had this when I was originally switched on in 1993, however it righted itself ver quickly - within 24 hours. It will be interesting to see how long it tkes me to get used to it this time round.
The good thing about SPEAK for me, with the higher stimultion ACE & CIS, the first six electrodes (low tones) were perfect - ver beautiful sound. The next six were very quiet, and they simply wouldn't go up much in volume at all. Basically the top six electrodes sounded totally crap. With SPEAK, all 13 electrodes are now the same loudness, and it's much more even sound quality. It's also tripled m battery lifed from 33 to 91 hours.
I am just so frustrated though. Sometimes I feel like sticking the processor in the drawer and giving up. I've come so close to that several times. A shrug of my shoulder, and I think 'oh well - my CI days are over'. Then a few hours will pass, or I'll get a good sleep, and I realise that no, it's too early to give up yet, especially while i have some sound If it was good at switchon, there must be a way to improve it again somehow.
So once again, I'm on DAY One of a new implant. This time with a new speech strategy to learn sound all over again.
Watch this space...
Nearly very month, I've had an electrode switched off. What would happen is that I would be remapped. Then a week or two after a remap, I would notice twitching sensations in various parts of my head. In my temple, or the back of my nose, or in the back of my throat. When this was tested, I would hear very little from it, and even scaling back the volume didn't stop the twitching sensations. So one by one the were turned off. I got down to 14 electrodes.
We decided to try the CIS speech strategy - a higher stimulation rate and often used for partial insertions. This uses 12 electrodes only and for the last 2 or 3 weeks I've been using this. It seemed quite promising as I was getting a better sound - less nasally than it was, but still there, but still not enough clarity for the phone or TV.
Then last week I noticed that a bird sits and chirps outside my window from about 3 to 5pm every day. And I noticed that ever time it chirped, I got a painful sensation from it. So I knew immediately that i was going to lose yet another electrode.
I asked for another appointment, and also asked if I could have an x-ray to make sure no elecgtrodes have somehow moved out of the cochlear. Highly unlikely but for peace of mind, needed doing. I'm still waiting for the results.
My appointment was today. Sure enough - another electrode was twitching in my temple and has been turned off. I live in hope that this will get rid of the painful bird chirps, as I don't think guns in urban areas go down very well! (I've told my cats but they've turned a deaf ear!!)
We wondered about going back to SPEAK - the lower stimulation rate speech strategy at 250hz which I had for 16 years with my old implant before it failed. We wondered if I was simply not coping with the high stimulation rate. So - a new map with the SPEAK strategy was done. It's on Monopolar, and I have a total of 13 electrodes. (It would have been 14 if I hadn't lost that other one today).
Because that electrode still twitched even on the lower stimulation rate, then I suspect it's not the actual stimulation rate that is causing it. We shall see.
A recap on stimulation rates - SPEAK is 250 hz, ACE is 900 hz, and CIS is 1100. with this new implant I was originally switched on with ACE, and recentl went to CIS. Now Im back with SPEAK.
Going back to SPEAK is like being switched on all over again, like I was 16 years ago in 1993. The sound is awful. My voice souds like it's in harmony, but very out of tune harmony. Like my voice has separated somehow and is two voices in one. People sound like they're talking in buckets, very dalek sounding like from Dr Who or robotic sounds. I had this when I was originally switched on in 1993, however it righted itself ver quickly - within 24 hours. It will be interesting to see how long it tkes me to get used to it this time round.
The good thing about SPEAK for me, with the higher stimultion ACE & CIS, the first six electrodes (low tones) were perfect - ver beautiful sound. The next six were very quiet, and they simply wouldn't go up much in volume at all. Basically the top six electrodes sounded totally crap. With SPEAK, all 13 electrodes are now the same loudness, and it's much more even sound quality. It's also tripled m battery lifed from 33 to 91 hours.
I am just so frustrated though. Sometimes I feel like sticking the processor in the drawer and giving up. I've come so close to that several times. A shrug of my shoulder, and I think 'oh well - my CI days are over'. Then a few hours will pass, or I'll get a good sleep, and I realise that no, it's too early to give up yet, especially while i have some sound If it was good at switchon, there must be a way to improve it again somehow.
So once again, I'm on DAY One of a new implant. This time with a new speech strategy to learn sound all over again.
Watch this space...
Friday, October 17, 2008
Another Deaf Unfriendly Company
I ordered some photos from my favourite photographic place the other day. Their service is second to none, and the quality of images wonderful. They also don't mind communnicating via email when needed, and their deliveries are on time and quick. Wonderful company.
Shame I can't say the same thing about the courier company that delivers their products. Not for the first time the images I ordered simply didn't arrive. The tracking number thaat they had given me showed up nothing on my end.
A quick call to the photo company, ascertained the goods were delivered by the courier company on Wednesday at 5pm. Not to here they weren't. Unfortunately, it's not the first time this courier company has delivered to the wrong address - same street name, but different suburb, and despite putting the postcode and suburb clearly marked, they still deliver it to the incorrect address. I don't think courier drivers can read.
The photo company were wonderful as usual, have totally reprinted my order and put it on same day courier so I should have them tonight - their name is Frogprints and everyone should use them whenever they have images they need printing. They use archival quality photographic paper and often have great sales. They also have lots of other services and products, not just photographic printing.
Frogprints will be contacting the courier company and asking to recover their costs of the reprint. However, I logged onto the courier company website so I could make a complaint. Would you believe, the courier company are so deaf unfriendly, that the only way you can contact them is physically going into a branch, or phoning an 0800 number? There was no email contact whatsoever. How bad is that?
I've emailed frogprints and asked them to pass on my discontent on being so deaf unfriendly as well as the incorrect delivery. The company concerned? New Zealand Couriers . For a big company like that, you would expect they could do better, in both delivering the goods, and delivering cutsomer service.
Shame I can't say the same thing about the courier company that delivers their products. Not for the first time the images I ordered simply didn't arrive. The tracking number thaat they had given me showed up nothing on my end.
A quick call to the photo company, ascertained the goods were delivered by the courier company on Wednesday at 5pm. Not to here they weren't. Unfortunately, it's not the first time this courier company has delivered to the wrong address - same street name, but different suburb, and despite putting the postcode and suburb clearly marked, they still deliver it to the incorrect address. I don't think courier drivers can read.
The photo company were wonderful as usual, have totally reprinted my order and put it on same day courier so I should have them tonight - their name is Frogprints and everyone should use them whenever they have images they need printing. They use archival quality photographic paper and often have great sales. They also have lots of other services and products, not just photographic printing.
Frogprints will be contacting the courier company and asking to recover their costs of the reprint. However, I logged onto the courier company website so I could make a complaint. Would you believe, the courier company are so deaf unfriendly, that the only way you can contact them is physically going into a branch, or phoning an 0800 number? There was no email contact whatsoever. How bad is that?
I've emailed frogprints and asked them to pass on my discontent on being so deaf unfriendly as well as the incorrect delivery. The company concerned? New Zealand Couriers . For a big company like that, you would expect they could do better, in both delivering the goods, and delivering cutsomer service.
Monday, October 13, 2008
It's one of THOSE days today!
Daylight savings started a week or so ago. All my clocks in the house were changed, but I never did get round to changing my watch. I've just been adding an hour every time I wanted to know the time. From past experience I should have known I'd stuff up eventually.
Yesterday was my birthday and I was out with my Dad and his wife. We were sitting in a cafe when we checked the time and found that they too hadn't forwarded their watches. So we all forwarded our watches together. A real 'family' moment!!!
Roll on to this morning. I woke up at 8.15am, added a hour. OMG - it's 9.15am - my car has to be at the carpainters 15 minutes ago. Jumped in the shower, came downstairs, grabbed my keys and put my sunglasses on and grabbed a banana. Was about to head out the door when I glanced at the kitchen clock - 8.30am! Groan - so I decided to have breakfast.
Banging around in the kitchen getting breakfast, I was wondering why everything was sooooo dark inside. Turned on the light - still dim. Weird. Eventually it dawned on me that I still had my sunglasses on!!! Duh!
I don't like how my day is turning out. Perhaps I should go back to bed???
Does this mean that at 47, there is no hope. I've spent the whole year thinking I was 47, so thats okay - I don't think I've aged, but maybe my brain is wired differently. I'm already using all my fingers and toes twice over to count my age - it's getting more and more difficult to keep with it - perhaps I should just think of a number, and that will be my age for the rest of my life. Would make it so easy.
Okay - a nice easy number - any suggestions anyone??
Yesterday was my birthday and I was out with my Dad and his wife. We were sitting in a cafe when we checked the time and found that they too hadn't forwarded their watches. So we all forwarded our watches together. A real 'family' moment!!!
Roll on to this morning. I woke up at 8.15am, added a hour. OMG - it's 9.15am - my car has to be at the carpainters 15 minutes ago. Jumped in the shower, came downstairs, grabbed my keys and put my sunglasses on and grabbed a banana. Was about to head out the door when I glanced at the kitchen clock - 8.30am! Groan - so I decided to have breakfast.
Banging around in the kitchen getting breakfast, I was wondering why everything was sooooo dark inside. Turned on the light - still dim. Weird. Eventually it dawned on me that I still had my sunglasses on!!! Duh!
I don't like how my day is turning out. Perhaps I should go back to bed???
Does this mean that at 47, there is no hope. I've spent the whole year thinking I was 47, so thats okay - I don't think I've aged, but maybe my brain is wired differently. I'm already using all my fingers and toes twice over to count my age - it's getting more and more difficult to keep with it - perhaps I should just think of a number, and that will be my age for the rest of my life. Would make it so easy.
Okay - a nice easy number - any suggestions anyone??
Wednesday, October 8, 2008
There are good people out there!
I've just put my house on the market. It's going to be listed next week, but before it lists it has to be A1 perfect, so I can get the best price for it.
My house was built only 9 years ago, and I had a lot of input into the planning of it, so it's gut wrenching to sell, but I have new plans afoot. Because the house is only 9 years old, there's not a lot that needs to be doing.
I have to paint the surrounds of the bath as 9 years ago I couldn't decide whether to paint around the bath, or tile it. 9 years later I was still undecided, and now it's on the market I've decided to do the cheaper option - paint!
There's a couple of holes in the wall that need fixing - they're now pollyfilled, but just need painting. And no - I didn't lose my temper - the TV fell off it's perch and crashed down, put a hole in the wall, and the TV disintegrated. Replacement insurance is a wonderful thing!
I also need to paint the surround around the garage door, as that's another job I never got around to 9 years ago. I've already pollyfilled hte nail holes and put the sealant on, and am now waiting for the weather to improve so I can paint that.
Lastly, the little piece of wood/melteca in my kitchen that goes under the oven, is completely ruined, so I got someone to wrench it off. I took it into placemakers yesterday to see if they could do me another piece by next Tuesday. It's not big - just 690 x 78mm. But no - they couldn't do it until 17 Oct and I need it by the 13th.
So this morning I got out the yellow pages, looked under Kitchen Designs and rang the first number..
The person answered, and I told them who I was and what I needed and asked if they could do this for me.
I heard clearly 'No, but if you were to ring xxxx they would be able to"
I explained I was deaf so they tried to repeat the name but I just couldn't get it - it was a single syllable word and to me it sounded like Save. She did tell me it was in the yellowpages of the phone book, so I said - I'd keep phoning through until I found someone to help.
So far so good. I had made a phone call and ascertained that they couldn't help but there 'may' be others out there that can.
Back to the Yellowpages, and I specifically looked for someone in my area as I dind't want to travel far to pick it up. Found a small ad, and rang.
There was NO way I could hear anything this person said at all. So once again I explained what I needed, explained that I was deaf, and asked him to just say yes or no if he could help. He said Yes (yay!). There was an email address listed in the yellow pages and I asked if this was it, he said no, but there was no way I could understand what it should be, so instead i gave him mine and asked him to email me.
Which he did.
I immediately emailed and thanked him and explained what I needed.
I would like to give a virtual award to Bob at Designa Kitchen and Cabinetry in Auckland, for going out of his way to help. He must be the best Customer Service person in New Zealand!
Cheers
Robyn
My house was built only 9 years ago, and I had a lot of input into the planning of it, so it's gut wrenching to sell, but I have new plans afoot. Because the house is only 9 years old, there's not a lot that needs to be doing.
I have to paint the surrounds of the bath as 9 years ago I couldn't decide whether to paint around the bath, or tile it. 9 years later I was still undecided, and now it's on the market I've decided to do the cheaper option - paint!
There's a couple of holes in the wall that need fixing - they're now pollyfilled, but just need painting. And no - I didn't lose my temper - the TV fell off it's perch and crashed down, put a hole in the wall, and the TV disintegrated. Replacement insurance is a wonderful thing!
I also need to paint the surround around the garage door, as that's another job I never got around to 9 years ago. I've already pollyfilled hte nail holes and put the sealant on, and am now waiting for the weather to improve so I can paint that.
Lastly, the little piece of wood/melteca in my kitchen that goes under the oven, is completely ruined, so I got someone to wrench it off. I took it into placemakers yesterday to see if they could do me another piece by next Tuesday. It's not big - just 690 x 78mm. But no - they couldn't do it until 17 Oct and I need it by the 13th.
So this morning I got out the yellow pages, looked under Kitchen Designs and rang the first number..
The person answered, and I told them who I was and what I needed and asked if they could do this for me.
I heard clearly 'No, but if you were to ring xxxx they would be able to"
I explained I was deaf so they tried to repeat the name but I just couldn't get it - it was a single syllable word and to me it sounded like Save. She did tell me it was in the yellowpages of the phone book, so I said - I'd keep phoning through until I found someone to help.
So far so good. I had made a phone call and ascertained that they couldn't help but there 'may' be others out there that can.
Back to the Yellowpages, and I specifically looked for someone in my area as I dind't want to travel far to pick it up. Found a small ad, and rang.
There was NO way I could hear anything this person said at all. So once again I explained what I needed, explained that I was deaf, and asked him to just say yes or no if he could help. He said Yes (yay!). There was an email address listed in the yellow pages and I asked if this was it, he said no, but there was no way I could understand what it should be, so instead i gave him mine and asked him to email me.
Which he did.
I immediately emailed and thanked him and explained what I needed.
I would like to give a virtual award to Bob at Designa Kitchen and Cabinetry in Auckland, for going out of his way to help. He must be the best Customer Service person in New Zealand!
Cheers
Robyn
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