I thought perhaps I should take a wee look at some numbers, some levels... to do with my hearing (or lack of same)... create a benchmark kinda sorta thing? So I can compare stuff... a 'before and after'... just for myself. I know I'm going to need all the encouragement I can get so this might well help. Not very scientific but still... here is Caroline's Self Help Study :)
So... lying in bed, next to the man I love, no hearing aids in and he speaks. On a scale of 1-10 (10 being perfectly understood), how does that sound? In a word... shite. In a number...hmmm 3. Lips moving, mumbles apparent. Words deciphered, 2 out of six. NONE if lips not on view. Shouting helps, but still sounds muffled...I do at least get the message. Words only normally decipherable if actually spoken (not shouted as that deforms the voice) in my ear from NO inches away. Consider the implications of this... or perhaps don't.
Same man I love, now standing bollock naked next to the bed and speaking in a normal voice (I am told) - result without aids in ...zilch. Speaking in a raised voice (aka shouting at me, which I hate as he's not great at doing that without the accompanying grimaces of someone shouting at you, and naked it's worse, honest!)... hmmm 5. Words deciphered, probably half. About par for the course. I probably filled in the other half in the way we HoH folks do... pot luck! Some you win, some you lose.
TV. I can't watch any TV (well, I can watch but can't HEAR it) without my audio loop. (Love love love my ringleiding! They should be built in everywhere but of course they're not, and even where they are they're not switched on or not at a useful level... pet hate of mine!... but I digress.) And I still need subtitles for everything even when using the loop. I generally watch tv with sound muted on the tv, as am on my own mostly, and hear the sound directly to my hearing aids. But for the purposes of this 'study' lemme check...
Hearing aids in... with my back to the tv, absolutely lowest level I hear a sound (which is in any case indecipherable) is no. 18 on the volume scale of my B&O telly. No. 23 is what I can use it for if I need sound on (if say, watching something together and then I suspect it is too loud for him) but then I do really still need the subtitles too. Totally useless to me but, just to get the level. The beeps at the audiological centre test are equally useless and they are used to measure what we hear (a huge annoyance because why is that used? It's such a useless test! But I suppose they need a level of some sort and everyone gets the same test). So...
Hearing aids out....TV is turned to 45 for me to hear the first wee sound! All still indecipherable and practically speaking still of no use without subtitling, it's just a mumble to me. Sheesh... I did not know that! hahaha. Won't put it higher...the dog was like bouncing off the couch already and it hurt even MY ears on switching my aids back on. Bloody hell! I've not tried that for years hahahaha
OK what's next?
In the bus or train... hmmm this is a funny one actually. I can often hear him fine! He can't hear me... too noisy!? But my directional mics must shut out extraneous noise and speech is ok... He can't even hear himself, but I hear me and him fine. Hah, maybe he needs hearing aids ;) Actually no he bloody doesn't. J is a good partner for a deaf person because he can hear a pin drop on a cushion through two closed doors! (Or a sweety jar being opened surreptitiously from one flight up!) Bloody annoying!
Noisy situations in general... say a reception or party or just a large group of folks together for whatever reason, are very tiring and frustrating. Scale of 1-10? Minus 6! It's all just a noise really. I manage, struggle along and laugh and smile (in all the wrong places I know) but you can only do even that for so long before your head explodes. Sure I've had conversations in these situations, I manage with a struggle, but if the person talking to me knew, even in the best of circumstances, how much of what they say is being (badly) lip-read, or plain guessed... Of course when they know I'm HoH they can laugh along with me when I respond inappropriately, but if I haven't actually mentioned my wee problem yet (I dont have it written on my forehead) I can get the funniest looks and a gradual shuffling to the side to escape me :) True story!
'We', HoH folks, are told to make sure folks know we are HoH, to ask for repeats, to ask to be spoken to directly and no mouths covered... and I do, honestly... but you can't continually, you just really can't. And the best of folks forget, or get frustrated after the third repeat, and fun conversation goes out the window if you have to stutter it to keep the deafie informed. So I am curious to know how these situations will change with my CI. I am trying not to put too many eggs in one basket... any improvement will be great.
I'm looking forward to being tested on 'words spoken behind a paper'...or a hand, whatever, mouth hidden, normal tone of voice. Because I basically only very rarely and with a touch of luck, make out what is said then. With the CI, this should...will...gradually improve. Now there will be some numbers to report on! I'm excited just thinking of this. It will take practice I know.
I am aware of, and am prepared for, the possibility of losing the remaining hearing in my left ear after the op. I'm told it may be saved but have to consider it lost until proven otherwise. Now, this is not a huge loss to be honest as, without my HA it's as good as useless anyway, The point is I can still hear with an aid in there. So the hope is of course that the CI will (eventually, I know, not immediately) create an improvement. If the op damages what is left, then that ear will be completely deaf without the CI and a HA will be useless for it. I was told he always of course tries to save it but that once in the cochlea, the wires kinda do their own thing. If he needs it to work it doesn't and when it doesn't really matter, it does... so he's very honest about it... Dr. Topsakal. I have every faith... for some reason. Don't know him from Adam but it's surely for the best to trust the guy about to drill a hole in your skull.
Now the doc also said that normally they operate on the best ear, to give the best chances of improvement, but my ears don't differ very much and I do favour my right as it was best for longest. So although the right is marginally better, he will 'do' the left for me. I'm glad about that as, even psychologically speaking, I'd prefer to have a tiny bit of hearing boosted by a HA on the right, rather than the left if that's all I'm getting... weird but true.
I think I've covered everything now. I look forward to looking back on this and comparing things :) Three weeks or so to go! NY countdown has begun. Op naar 2014!
Tuesday, December 31, 2013
Saturday, December 21, 2013
Operation date is set!
Now we're cookin' wi' gas!
Got post today. I've to sign in on 21 st January 2014 and the op is on the 22nd. Have to reckon on 3 or 4 days in hospital. I'm all of a flutter...it's really happening now!
J is considering getting accommodation for a couple of nights as he will of course want to be around, and it's 2 hours there and 2 hours back on public transport otherwise. So we'll see.
I have also had another appointment added to the 13th... for 9 a.m.... which means a waaay early start to get there on time. But, needs must, so it's up in the morning Caroline!
We will be back and forward to the UMC very regularly in the coming months what with recuperation and getting switched on and learning to hear with the CI and what not, so it's no small investment in fares alone.
I should be 'out of the picture' as far as work is concerned for about a week at least, but am hoping I will be quite capable after that as of course I have had a long down time due to my broken wrist. I hope not to miss much more. My client is very patient and understands that this typing lark is really none too smooth with one hand missing. One ear missing shouldn't really add to the problem at all :)
I have just realised that the 'translator' link on here is of course Google...which is handy but awful and is more for Dutch to translate stuff (badly!) to English. I will try and add something for English speakers to translate Dutch words to English. Is what is more required I think, although I haven't used much Dutch...so far.
Got post today. I've to sign in on 21 st January 2014 and the op is on the 22nd. Have to reckon on 3 or 4 days in hospital. I'm all of a flutter...it's really happening now!
J is considering getting accommodation for a couple of nights as he will of course want to be around, and it's 2 hours there and 2 hours back on public transport otherwise. So we'll see.
I have also had another appointment added to the 13th... for 9 a.m.... which means a waaay early start to get there on time. But, needs must, so it's up in the morning Caroline!
We will be back and forward to the UMC very regularly in the coming months what with recuperation and getting switched on and learning to hear with the CI and what not, so it's no small investment in fares alone.
I should be 'out of the picture' as far as work is concerned for about a week at least, but am hoping I will be quite capable after that as of course I have had a long down time due to my broken wrist. I hope not to miss much more. My client is very patient and understands that this typing lark is really none too smooth with one hand missing. One ear missing shouldn't really add to the problem at all :)
I have just realised that the 'translator' link on here is of course Google...which is handy but awful and is more for Dutch to translate stuff (badly!) to English. I will try and add something for English speakers to translate Dutch words to English. Is what is more required I think, although I haven't used much Dutch...so far.
Thursday, December 19, 2013
POS date!
oooh, it's really going to happen!
Have a preoperative screening for the CI on 13 January already. Will update on that when the time comes.
I'm hoping my dodgy wrist in a sling won't be any sort of spanner in the works...but I doubt it will really. No operation required on it I'm told although I'm not actually happy about the condition it's in. I dunno...just expected better on removal of the cast...not this alien looking lump on the end of my arm? I have to really work at getting my arm and hand functioning properly again. I worry that 'they' should have operated right away as it looks a weird shape! But too late now. (My incidental trip and near fall to my face off the bus on the way to the hospital not withstanding, my ankle is at least OK again!)
So, we'll get Christmas and New Year out of the way, and then it's full steam ahead eh?
Spannend!
Have a preoperative screening for the CI on 13 January already. Will update on that when the time comes.
I'm hoping my dodgy wrist in a sling won't be any sort of spanner in the works...but I doubt it will really. No operation required on it I'm told although I'm not actually happy about the condition it's in. I dunno...just expected better on removal of the cast...not this alien looking lump on the end of my arm? I have to really work at getting my arm and hand functioning properly again. I worry that 'they' should have operated right away as it looks a weird shape! But too late now. (My incidental trip and near fall to my face off the bus on the way to the hospital not withstanding, my ankle is at least OK again!)
So, we'll get Christmas and New Year out of the way, and then it's full steam ahead eh?
Spannend!
Friday, December 06, 2013
Then and now
I can honestly say that I have hoped to one day get a CI since I first ever read about them...the very idea! Wow! Didn't think it really would ever apply to me but always said 'IF my hearing gets so bad that I would improve with one of those things...I'm up for it'. James has always been against it really... '...there will be no holes bored in my head...ever!' But that was more for him, and he has (infuriatingly) perfect hearing. The thought of 'them' boring holes in my head did not please him much either...and to be honest neither of us thought it would ever apply.
But now it does!
It has been a long time coming because I was oooh, 28? when all this nonsense started. I'm now 58... 59 next week so a good 30 years. I've gone through six pairs of hearing aids in ever advancing state-of-the-art styles (including the pair I accidentally flushed down the loo). The five to six years between each new model has always been long enough to keep up with my ever-decreasing hearing range, and technological advances made sure I didn't need to wear bigger and bigger apparatus. They got smaller and more super-duper every time, and are now of course digital, which sees them connected to computers for the fine tuning...amazing bloody things really! And of course ever more expensive!
I've always had two of the 'best of the best', mostly covered by health (and other) insurance(s) here in NL. I've had 'em in blue too! Never been bothered about them being seen - although I didn't go quite so far as to decorate them I do love this idea. I remember struggling with them at first...only wore them for TV use the first couple of years. Silly when I think of it now but, having them set properly and comfortably to your hearing range is very important as well as time consuming, and you keep putting things off, or you just 'cope with them'.
I got ever more demanding of good settings I think, (and why not!?) but it is a frustrating period, those first months after getting new ones. I'm of course the only one that can say if I'm hearing ok with them right now... and even when set to your audiogramme via the computer, that need not say that you hear good with them! You also have to try things out and 'get used' to the sounds you are hearing, so it was back and forwards to the shop, and sometimes even the AMC (Amsterdam Medical Centre) for fine tuning, every new pair of 'ears' - it can be very frustrating. Now here I'm talking about Hearing Aids... and I know the same goes IN SPADES for a CI.
It's now about two years (more?) since I read a call for volunteers to be double sided implanted at the UMC (Utrecht Medical Centre).'Ah'll dae it!' says me. Double sided is generally considered best.... same as having two hearing aids is best (two ears!) - (and I will of course continue to wear one hearing aid on the right side). But as it is of course so expensive, insurance companies are still refusing to 'conform', it not being clinically proven that 2 is any better. So a trial was needed to implant a group of folks - half with 2 implants immediately, half with one for a year followed by a 2nd in year 2. The whole group would then have two at the end of two years and various tests and measurements would hopefully prove the real usefulness of double implantation (I'm not aware of the trial results)..
So 'nothing ventured, nothing gained' and I put myself forward as a guinea-pig. Long story short, my hearing was still not bad enough to require one so I couldn't take part in the trial but I was 'on the edge' so to speak and perhaps in the not too distant future I would be suitable for one at least. Recommended to come back at regular intervals to see.
This I did. Me and P would make a day of 'ladies wot do lunch' followed by (window) shopping in Utrecht out of it so it was no hardship. A couple of times was no, still not in line for a CI but then all of a sudden, 'Yes, your hearing would be significantly improved'...woop woop! It's a mixed reaction of course because well...it means my hearing has deteriorated significantly which is no fun...so hmmm woop woop? Next visit was to be more tests so J went with me...only to be told 'ahem, the machine had just been recalibrated so gave a wrong reading last time, so now you are back to 'on the edge'. aw naw! What now?
OK so we schedule a CI social worker session together. This was a rather trying and telling consultation that pinpointed my frustrations about my lack of hearing in general and my suitability or otherwise for a CI in particular! I was totally taken aback with how the SW seemed to know which button to press to have me dissolve into tears...so unexpected! I actually wasn't going to go back, it was kinda depressing. But J (of all people!) convinced me we needed to have another session and hammer stuff out and give them a proper chance to decide whether to really put me forward as a good candidate or not...and not just wimp out, then always wonder if I should perhaps have persevered - especially as I'd wanted this for so long.
He was right too. Apparently, my 'attitude' is all wrong... who knew?!... and I myself contribute to the difficulties I experience in communication (on all levels, with all folks). So I promised to work on that and honestly have been doing so... I think. A final consultation seemed to convince the SW that A) I can and will cope with a CI and B) I understand where I've been making things harder than necessary. Now, that was then, and this is now, so don't be pulling me up on it but it was useful to be confronted in that way and I really do try and remember to work on things. :)
The next we were to hear was 'the decision' and a letter duly arrived with an appointment with a surgeon already! so while still not certain, we did kinda think it must be a 'yes', and it was (although if I'm honest here, J was the one that was certain, I only gave it 20% chance and was really pretty flabbergasted to be wrong...again - are you sensing a pattern?). Dr Topsakal explained everything and filled his consultation with worst case scenarios and 'reasons why not to' so was very down to earth about it all. He was very patient and answered all our questions then said 'you are now in the planning to be operated on in January or February... see you then'. :))
So yes, I am prepared for shitty times as well as days of wonder. The op is the least I'm bothered about but ask me again around March ;)
I hereby promise to do my best to do my duty to... oh no wait, that's the Brownie code :) But seriously I am going to pull out all the stops on this one and really try to make the transition to HEARING with a CI as physically and mentally painless as possible. Not just for me but for J too who is of course totally wired to be my partner in this whole shebang. It's a big commitment by all accounts and not to be taken lightly. Another reason I'm writing in here is to document the whole process.
I'm told I will be getting a Med-El apparatus, which is fine by me. There are various manufacturers all much of a muchness so I have no preference and what I read on the Med-El models sounds cool to me. The surgeon said he's used them to his satisfaction regularly already and is why it is his choice for me. I could ask for another type if I wanted but have no reason to do so. Not sure what model I will get but have to say I do fancy the Rondo...time will tell if that is suitable for me, don't want to jump the gun and will be content with what I am given.
I'm aiming for conversations with J (others too of course but especially him) where he doesn't have to repeat things, or rephrase them, even if I'm not looking at his lips. Oh how terrific will that be? I'm aiming on not losing my grandsons' interest when in years to come they are all talking to their grammy but she can't hear them! The very idea that that could be a thing of the past is so heartening!. I still remember how awful it was when wee E would cry when I asked her to 'say something again for mummy'... she just never did understand why...ah she was only wee.
So... bye bye to a lot of frustrations... and hello hello to new, different ones (for a while perhaps). I've honestly only heard good reports about CI use from users of varying degrees from totally (born) deaf, to late (totally) deaf, to HoH folks like me. I did LOL at one report of someone losing their new one...and finding it hanging by the magnet to the metal lamp standard behind the waiting room chair. :) Every specialist I've spoken to has impressed upon me that I WILL hear better with one and it can only be an improvement so... I'm ready, willing and waiting on the whole nine yards. I am also very appreciative of the fact that the procedure is covered by health insurance.
I also kind of like the whole 'Bionic Woman' trip if I'm honest ;)
But now it does!
It has been a long time coming because I was oooh, 28? when all this nonsense started. I'm now 58... 59 next week so a good 30 years. I've gone through six pairs of hearing aids in ever advancing state-of-the-art styles (including the pair I accidentally flushed down the loo). The five to six years between each new model has always been long enough to keep up with my ever-decreasing hearing range, and technological advances made sure I didn't need to wear bigger and bigger apparatus. They got smaller and more super-duper every time, and are now of course digital, which sees them connected to computers for the fine tuning...amazing bloody things really! And of course ever more expensive!
I've always had two of the 'best of the best', mostly covered by health (and other) insurance(s) here in NL. I've had 'em in blue too! Never been bothered about them being seen - although I didn't go quite so far as to decorate them I do love this idea. I remember struggling with them at first...only wore them for TV use the first couple of years. Silly when I think of it now but, having them set properly and comfortably to your hearing range is very important as well as time consuming, and you keep putting things off, or you just 'cope with them'.
I got ever more demanding of good settings I think, (and why not!?) but it is a frustrating period, those first months after getting new ones. I'm of course the only one that can say if I'm hearing ok with them right now... and even when set to your audiogramme via the computer, that need not say that you hear good with them! You also have to try things out and 'get used' to the sounds you are hearing, so it was back and forwards to the shop, and sometimes even the AMC (Amsterdam Medical Centre) for fine tuning, every new pair of 'ears' - it can be very frustrating. Now here I'm talking about Hearing Aids... and I know the same goes IN SPADES for a CI.
It's now about two years (more?) since I read a call for volunteers to be double sided implanted at the UMC (Utrecht Medical Centre).'Ah'll dae it!' says me. Double sided is generally considered best.... same as having two hearing aids is best (two ears!) - (and I will of course continue to wear one hearing aid on the right side). But as it is of course so expensive, insurance companies are still refusing to 'conform', it not being clinically proven that 2 is any better. So a trial was needed to implant a group of folks - half with 2 implants immediately, half with one for a year followed by a 2nd in year 2. The whole group would then have two at the end of two years and various tests and measurements would hopefully prove the real usefulness of double implantation (I'm not aware of the trial results)..
So 'nothing ventured, nothing gained' and I put myself forward as a guinea-pig. Long story short, my hearing was still not bad enough to require one so I couldn't take part in the trial but I was 'on the edge' so to speak and perhaps in the not too distant future I would be suitable for one at least. Recommended to come back at regular intervals to see.
This I did. Me and P would make a day of 'ladies wot do lunch' followed by (window) shopping in Utrecht out of it so it was no hardship. A couple of times was no, still not in line for a CI but then all of a sudden, 'Yes, your hearing would be significantly improved'...woop woop! It's a mixed reaction of course because well...it means my hearing has deteriorated significantly which is no fun...so hmmm woop woop? Next visit was to be more tests so J went with me...only to be told 'ahem, the machine had just been recalibrated so gave a wrong reading last time, so now you are back to 'on the edge'. aw naw! What now?
OK so we schedule a CI social worker session together. This was a rather trying and telling consultation that pinpointed my frustrations about my lack of hearing in general and my suitability or otherwise for a CI in particular! I was totally taken aback with how the SW seemed to know which button to press to have me dissolve into tears...so unexpected! I actually wasn't going to go back, it was kinda depressing. But J (of all people!) convinced me we needed to have another session and hammer stuff out and give them a proper chance to decide whether to really put me forward as a good candidate or not...and not just wimp out, then always wonder if I should perhaps have persevered - especially as I'd wanted this for so long.
He was right too. Apparently, my 'attitude' is all wrong... who knew?!... and I myself contribute to the difficulties I experience in communication (on all levels, with all folks). So I promised to work on that and honestly have been doing so... I think. A final consultation seemed to convince the SW that A) I can and will cope with a CI and B) I understand where I've been making things harder than necessary. Now, that was then, and this is now, so don't be pulling me up on it but it was useful to be confronted in that way and I really do try and remember to work on things. :)
The next we were to hear was 'the decision' and a letter duly arrived with an appointment with a surgeon already! so while still not certain, we did kinda think it must be a 'yes', and it was (although if I'm honest here, J was the one that was certain, I only gave it 20% chance and was really pretty flabbergasted to be wrong...again - are you sensing a pattern?). Dr Topsakal explained everything and filled his consultation with worst case scenarios and 'reasons why not to' so was very down to earth about it all. He was very patient and answered all our questions then said 'you are now in the planning to be operated on in January or February... see you then'. :))
So yes, I am prepared for shitty times as well as days of wonder. The op is the least I'm bothered about but ask me again around March ;)
I hereby promise to do my best to do my duty to... oh no wait, that's the Brownie code :) But seriously I am going to pull out all the stops on this one and really try to make the transition to HEARING with a CI as physically and mentally painless as possible. Not just for me but for J too who is of course totally wired to be my partner in this whole shebang. It's a big commitment by all accounts and not to be taken lightly. Another reason I'm writing in here is to document the whole process.
I'm told I will be getting a Med-El apparatus, which is fine by me. There are various manufacturers all much of a muchness so I have no preference and what I read on the Med-El models sounds cool to me. The surgeon said he's used them to his satisfaction regularly already and is why it is his choice for me. I could ask for another type if I wanted but have no reason to do so. Not sure what model I will get but have to say I do fancy the Rondo...time will tell if that is suitable for me, don't want to jump the gun and will be content with what I am given.
I'm aiming for conversations with J (others too of course but especially him) where he doesn't have to repeat things, or rephrase them, even if I'm not looking at his lips. Oh how terrific will that be? I'm aiming on not losing my grandsons' interest when in years to come they are all talking to their grammy but she can't hear them! The very idea that that could be a thing of the past is so heartening!. I still remember how awful it was when wee E would cry when I asked her to 'say something again for mummy'... she just never did understand why...ah she was only wee.
So... bye bye to a lot of frustrations... and hello hello to new, different ones (for a while perhaps). I've honestly only heard good reports about CI use from users of varying degrees from totally (born) deaf, to late (totally) deaf, to HoH folks like me. I did LOL at one report of someone losing their new one...and finding it hanging by the magnet to the metal lamp standard behind the waiting room chair. :) Every specialist I've spoken to has impressed upon me that I WILL hear better with one and it can only be an improvement so... I'm ready, willing and waiting on the whole nine yards. I am also very appreciative of the fact that the procedure is covered by health insurance.
I also kind of like the whole 'Bionic Woman' trip if I'm honest ;)
Thursday, December 05, 2013
so...Caroline's getting a CI!
Actually, it's only since being somewhat at a loose end - too much time on my hands with this broken wrist! - do I feel inspired to try and follow the trajectory of my journey into Cochlear Implant land.
I have no idea if this or any other bollix I may or may not spout will be of interest to anyone else on the planet, but the main idea for myself is really to (relatively) closely document the months of wonderment, hope, frustration and joy I will surely encounter in 2014 due to the fact that I am now to get a hole bored in my head and flaps adjusted behind my left ear to place a cochlear implant.
I will undertake to be as explanatory as I can, and will use links to various websites if and when it seems appropriate. I will be as honest as I can about things... this might well include sweary words. It's my blog, a kind of diary if you will, so I'm not apologising. Just be assured that no offence is intended.
This whole endeavour may well be peppered with Dutch words and phrases. Living here so long, I tend to do this all day and every day in speech too, especially in discussion with folks I know will know what I am saying. I realise that this is not always ideal if addressing a solely English speaker but it knackers my flow if I have to reword every single thing so... please use the handy translator provided here above left if this proves at all problematic.
I have no idea if this or any other bollix I may or may not spout will be of interest to anyone else on the planet, but the main idea for myself is really to (relatively) closely document the months of wonderment, hope, frustration and joy I will surely encounter in 2014 due to the fact that I am now to get a hole bored in my head and flaps adjusted behind my left ear to place a cochlear implant.
I will undertake to be as explanatory as I can, and will use links to various websites if and when it seems appropriate. I will be as honest as I can about things... this might well include sweary words. It's my blog, a kind of diary if you will, so I'm not apologising. Just be assured that no offence is intended.
This whole endeavour may well be peppered with Dutch words and phrases. Living here so long, I tend to do this all day and every day in speech too, especially in discussion with folks I know will know what I am saying. I realise that this is not always ideal if addressing a solely English speaker but it knackers my flow if I have to reword every single thing so... please use the handy translator provided here above left if this proves at all problematic.
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