Yesterday 25th April 2019, I went back to UMC Utrecht as the audiologist had been in contact with Med-El about the 'dodgy wire in the implant' and they have suggested to turn it off entirely and compensate with others. Now, while I'm perfectly happy with how things currently sound, if things can be improved, which I doubt, I'm happy to play along and now the audiologist had the time to mess with it.
The fact that the wonky wiring... bit of an exaggeration but let's call it that... could, in the future, prove problematic, was an incentive to at least attempt a workaround.
The audiologist as per usual explained it all to me. This was all very plain and perfectly understandable but I find that now have to reproduce said explanation here... not happening! So, just trust me, it was clear to me what the plan was.
She 'fiddled about, fiddled about' and I got beeps fired at me. I'd to indicate if too loud or not loud enough. It was strange to see how she was pressing the key to give a sound and I didn't hear anything until maybe key-stroke number 5 so I asked about that. I was worried that I should be hearing it come through sooner. But no, they start way too quiet to see just where you hear it come in. Made sense.
'So, how does this sound?'... well let me tell you kind lady, hysterical. Hughy, Dewy and Louie had entered the room! Nooo, can't have that! So a bit more fiddling, more adjustments, more beeps and I'd now to indicate if things were going in the right direction. They were indeed. It's fascinating stuff really!
Still sounded different so she kept my 'previous' mapping on the remote so I can switch back and forth. Wasn't crazy about this new sound at first but when I then switched to original... woah! Voice so deep?! How can that be? Well, my brain apparently does still work and had already kicked in to accept how this new sound is! Back again to the new one... much better! How strange!
So after nigh on an hour of all this, fixing, measuring, adjusting and trying-out, I leave for home. But oh! I'm not out of the building yet and the sound cuts out every few minutes? So back I go. Shame to waste the chance of a quick fix. I catch her just as she's taking in a new 'patient' so have to wait. I sit there for half an hour, nothing, no change, no cutting out. So I tell the receptionist to let her know I've left and not to worry. I walk the length of the corridor, cuts out twice! So I go back, it's a movement thing obviously? Then I realise, the processor is sitting on the hair tether! Sorted haha. I've not been using a tether with the old Rondo for about a year so had forgotten to make sure it's out of the way. Duh.
I wore my processor with the new settings all the way home. It's an improvement, definitely. Some voices (in the train) are still a little bit weird, so I was curious to know how J would sound when I got home. By the time I get off the train though, those voices don't sound silly any more! And neither did J. I kept switching things back to the old settings and the difference is pretty great actually and I'm definitely in favour of the new one.
I was told it wouldn't sound different on audio loop (tv) but there really is a difference - maybe she meant 'not different to not on the loop'. I'm not eloquent enough to explain though. How can familiar voices, that already sounded 'normal', suddenly sound different at first, but then shortly after, normal again, yet different to the first way you heard them when you check with the old settings? And yet, still good, better in fact? Confuses the hell out of me if I'm honest but just taking it as a given.
So, I'm down one wire but am improved! Now no chance of a problem with the wire because it's already switched off and compensated for. I bloody love what they can do!!
I've to let the audiologist know but we were already laughing at how amazing it was and it has only improved since then so, doubt I will need anything else done.
While hanging about there, I was approached by a man asking how satisfied I am with my CI. He had never met anyone wearing one and wondered could I tell him. Well, did I! I'm sure I made him really enthusiastic for one now! He was to be assessed and was still dubious but I did my usual blethers all about my Rondo(2). I should have taken his details, or given him mine, but I didn't. I hope he at least remembers the link I gave him (OPCI) to look up more info. and that he is accepted for getting an implant. For all I know it's not for him, but it won't be because I put him off :)
Latest news... I have been approached, don't know how actually, by Med-El here in NL, if I'd be amenable to taking part in an interview of some sort, about wearing a CI. So, of course, I'm up for that. Watch this space.
Friday, April 26, 2019
Tuesday, April 02, 2019
Upgraded already!
It has been an incredibly fast five years since being implanted - Hole In The Head, HITHday, see blog for January 22nd 2014 - and then switched on - SOday, see blog for 12th of February 2014 - but with nothing but good to say about my MedEl Rondo, I have now received a new upgrade called the RONDO2 from MedEl.
Here's me listening to the beeps.
The switchover was totally painless, emotionally as well as physically. I actually thought I'd have to hand back my Van Gogh stickered Rondo and remote control but not a bit of it. Can keep it as a backup. I suppose it's no use to anyone else as it has to match a MedEl implant and it is after all 'out of date' so, happy to not say goodbye to it. I anyway still have the Opus2, which I wore only once to test it, so I figure I'm well covered.
The audiologist at UMC was great, very thorough and didn't rush anything at all. She was very reassuring and very explanatory about everything. They actually always are but she was really great. J came with me as he was there at the very start so thought to keep the momentum going, so to speak.
The only problem in five years that I had with my Rondo was that one time I couldn't get the lid back on, a little lip was bent. Immediately replaced. Never a bad day since.
I don't have and never have had, fancy programmes to switch to although I could ask for them. I always found them more of a pest than anything else, to be honest. You switch to 'this' situation, then forget and wonder why you can't hear well in 'this' situation. You are constantly fiddling with things and trying back and forth between settings... not for me. I know I'm deaf, I don't need to be constantly reminded! Swapping batteries is reminder enough but have always appreciated that the CI never 'runs down', it just warns you that soon it will stop and then does. No worrying about 'does it need changing because I'm not hearing enough with it'.
I have ONE programme, hears everything, I can adjust the volume if necessary but it rarely is and I can use the remote to pinpoint someone if necessary but it rarely is. Plus I use the remote to switch to T so I hear via an audio loop when needed (TV etc.). So no special 'music' programmes for me or situation settings. Just a new working ear. Full stop. Five years, never a problem and only continually improving. I really cannot praise things highly enough.
So now I have Rondo2 and the sound is exactly the same after setting things up. I wasn't sure if it was even possible to improve things and the audiologist was more 'if it's not broken, why fix it?' so I'm perfectly happy.
She did notice that internally (no idea how but they can read all that on the computer) one of the 'wires' was a bit wonky by my cochlea but testing with beeps proved it's still picking things up sufficiently. She switched it off momentarily and it was like she and J had taken a big suck at a helium balloon, so that was mildly hysterical. She switched it back on as that was just to show me that they can adjust and compensate even if it eventually packs in on that one wire. She will speak to the manufacturer, just to let them know but for now, no problem. If it was to get worse, then it's a known problem, something already noticed, which is cool. I would otherwise perhaps need a new implant so we don't want to go there unless absolutely necessary, and it's patently not.
I wore my 'old' Rondo home as the new is of course not yet insured and at €8.5K it's definitely the most expensive piece of jewellery I will ever have that's for sure. So very grateful. I am of course reminded every day on waking up, just how deaf I am without it and just how useless my hearing aids were. How the hell I managed with them I do not know, but it might well account for my inherent bolshie attitude, putting up with them driving me bonkers for as long as I did. That's my story and I'm sticking to it.
I left the hospital with my two inches round (roughly) CI in a huge carry-on sized rucksack. Unreal! But the giant box inside comes with lots of bits and bobs, cables and chargers and accessories... an Artone 3 Max Wireless Streamer. Nice surprise! This is the one I almost paid €300 for a while back but decided to wait. Glad I did. That said, I can make head nor tail of the thing so it might be a while before I actually use it.
I put stickers of choice on my old Rondo, needed three new batteries every three days on average and had to buy special batteries for using the 'Waterwear' to swim with it. Rondo2 comes with four different lids, two fancy, two plain, easily swapped, and a charger, batteries no longer required. The internal, non-replaceable, rechargeable battery lasts up to 16 hours at a go, which should normally be sufficient but there is an external battery pack too, for the odd occasion I'm up partying all night. ;) I will have to have one or other with me any time I'm away from home but that's no huge problem. Huge saving, not having to buy batteries any more! One pack full of Waterwear comes free too, plus the whole thing is already damp resistant. There's a handy hair clip too. I hadn't been using one for about a year as it was fiddly to replace after breaking, but feel I should again, this being so new. It's a better one altogether.
side by side, Rondo Left, Rondo2 right.
All in all, it was like Christmas opening out the contents of the rucksack and the box. Whether I ever use the rucksack is beside the point but it's much more likely than the briefcase affair they gave me with the Rondo.
You can clearly see that Rondo2 is slimmer. It's also much lighter.
This is the USB charger pad with both EU and UK plugs (US and somewhere else too but I won't need them I don't think).
Over the last wee while, I've made new HoH friends who finally took steps towards getting an implant and two are currently still in the recuperation and practice period. One is a lot younger than me and one is a good bit older. I love how age is not a consideration! A third is up for the operation next week, same age. It has been wonderful to see the progress made by people I actually know and can discuss things with and it's all positive so far although no. 3 is nervous about losing what music she can still hear. I look forward to hearing about her progress.
A Rondo(2) is not often chosen but only because of fears about it falling off, not because of sound quality, which is exactly the same. I personally find the fear of it falling off to be unfounded although I'll admit to having sent it flying myself a couple of times through the years. It's a sturdy piece of equipment though and oh, that's a point, I didn't get a protective silicon sleeve for the new one. Hmm, maybe not needed? Might enquire about that.
There are no cables to worry about though, or fiddly bits needing renewed like on the behind-the-ear models, and the Rondo2 is even sleeker so I'm just all for the thing. Music reception too has improved exponentially over the years and I really feel they should use me as a walking advert for the thing because I'm crazy about it. Either directly in my CI or just as surrounding sound, I hear music pretty darned good and don't take my CI off at rock concerts even. I do still lift it that millimetre off my head at intervals, just to check what I'd be missing if I didn't have it on.
I still love having the advantage over hearing people of being able to just take it off my head so's not to hear rackets. Seriously, you go from longing to hear everything, to shuuut uuuup! I don't generally leave it off for long though, other than in bed, as the tinnitus starts the factory/bagpipes-at-the-tattoo/cheering crowds cacophony if I leave it off too long. But folks, it's your loss, honestly :)
I still wear my hearing aid in the opposite ear, finding it completes things. I cannot even remotely function with hearing aid alone. I find it next to useless, although it does pick up just enough to get by. With nothing, no CI and no HA, I only hear a tiny little bit if you shout in my HA ear (CI ear nothing at all). CI processor alone, millions better than HA alone, I could manage well without the hearing aid. Then add the HA to the CI... totally normal as far as I can assess... like 98%. So somehow the HA rounds things off. I don't quite understand how that works but I'll take it!
By the time I get my next upgrade, I will be almost 70. A sobering thought to imagine how isolated I'd have been for years already, without my implant. Not to mention I'll be almost 70! argh! This fabulous thing has improved the hearing of thousands over the whole world in the last 40 years, improving all the time, and I'm one of the lucky recipients. I suspect things will get even sleeker, perhaps totally internal, before even my next upgrade. I know they're already working on that.
Time will tell. I'm so lucky and so grateful.
p.s. Please ignore the weird layout... Who the hell knows how to do things when the draft looks perfecctly fine!
The switchover was totally painless, emotionally as well as physically. I actually thought I'd have to hand back my Van Gogh stickered Rondo and remote control but not a bit of it. Can keep it as a backup. I suppose it's no use to anyone else as it has to match a MedEl implant and it is after all 'out of date' so, happy to not say goodbye to it. I anyway still have the Opus2, which I wore only once to test it, so I figure I'm well covered.
The audiologist at UMC was great, very thorough and didn't rush anything at all. She was very reassuring and very explanatory about everything. They actually always are but she was really great. J came with me as he was there at the very start so thought to keep the momentum going, so to speak.
The only problem in five years that I had with my Rondo was that one time I couldn't get the lid back on, a little lip was bent. Immediately replaced. Never a bad day since.
I don't have and never have had, fancy programmes to switch to although I could ask for them. I always found them more of a pest than anything else, to be honest. You switch to 'this' situation, then forget and wonder why you can't hear well in 'this' situation. You are constantly fiddling with things and trying back and forth between settings... not for me. I know I'm deaf, I don't need to be constantly reminded! Swapping batteries is reminder enough but have always appreciated that the CI never 'runs down', it just warns you that soon it will stop and then does. No worrying about 'does it need changing because I'm not hearing enough with it'.
I have ONE programme, hears everything, I can adjust the volume if necessary but it rarely is and I can use the remote to pinpoint someone if necessary but it rarely is. Plus I use the remote to switch to T so I hear via an audio loop when needed (TV etc.). So no special 'music' programmes for me or situation settings. Just a new working ear. Full stop. Five years, never a problem and only continually improving. I really cannot praise things highly enough.
So now I have Rondo2 and the sound is exactly the same after setting things up. I wasn't sure if it was even possible to improve things and the audiologist was more 'if it's not broken, why fix it?' so I'm perfectly happy.
She did notice that internally (no idea how but they can read all that on the computer) one of the 'wires' was a bit wonky by my cochlea but testing with beeps proved it's still picking things up sufficiently. She switched it off momentarily and it was like she and J had taken a big suck at a helium balloon, so that was mildly hysterical. She switched it back on as that was just to show me that they can adjust and compensate even if it eventually packs in on that one wire. She will speak to the manufacturer, just to let them know but for now, no problem. If it was to get worse, then it's a known problem, something already noticed, which is cool. I would otherwise perhaps need a new implant so we don't want to go there unless absolutely necessary, and it's patently not.
And a very fine rucksack it is.
I left the hospital with my two inches round (roughly) CI in a huge carry-on sized rucksack. Unreal! But the giant box inside comes with lots of bits and bobs, cables and chargers and accessories... an Artone 3 Max Wireless Streamer. Nice surprise! This is the one I almost paid €300 for a while back but decided to wait. Glad I did. That said, I can make head nor tail of the thing so it might be a while before I actually use it.
Leaving the hospital with my wee rucksack.
All in all, it was like Christmas opening out the contents of the rucksack and the box. Whether I ever use the rucksack is beside the point but it's much more likely than the briefcase affair they gave me with the Rondo.
You can clearly see that Rondo2 is slimmer. It's also much lighter.
This is the USB charger pad with both EU and UK plugs (US and somewhere else too but I won't need them I don't think).
Over the last wee while, I've made new HoH friends who finally took steps towards getting an implant and two are currently still in the recuperation and practice period. One is a lot younger than me and one is a good bit older. I love how age is not a consideration! A third is up for the operation next week, same age. It has been wonderful to see the progress made by people I actually know and can discuss things with and it's all positive so far although no. 3 is nervous about losing what music she can still hear. I look forward to hearing about her progress.
A Rondo(2) is not often chosen but only because of fears about it falling off, not because of sound quality, which is exactly the same. I personally find the fear of it falling off to be unfounded although I'll admit to having sent it flying myself a couple of times through the years. It's a sturdy piece of equipment though and oh, that's a point, I didn't get a protective silicon sleeve for the new one. Hmm, maybe not needed? Might enquire about that.
There are no cables to worry about though, or fiddly bits needing renewed like on the behind-the-ear models, and the Rondo2 is even sleeker so I'm just all for the thing. Music reception too has improved exponentially over the years and I really feel they should use me as a walking advert for the thing because I'm crazy about it. Either directly in my CI or just as surrounding sound, I hear music pretty darned good and don't take my CI off at rock concerts even. I do still lift it that millimetre off my head at intervals, just to check what I'd be missing if I didn't have it on.
I still love having the advantage over hearing people of being able to just take it off my head so's not to hear rackets. Seriously, you go from longing to hear everything, to shuuut uuuup! I don't generally leave it off for long though, other than in bed, as the tinnitus starts the factory/bagpipes-at-the-tattoo/cheering crowds cacophony if I leave it off too long. But folks, it's your loss, honestly :)
I still wear my hearing aid in the opposite ear, finding it completes things. I cannot even remotely function with hearing aid alone. I find it next to useless, although it does pick up just enough to get by. With nothing, no CI and no HA, I only hear a tiny little bit if you shout in my HA ear (CI ear nothing at all). CI processor alone, millions better than HA alone, I could manage well without the hearing aid. Then add the HA to the CI... totally normal as far as I can assess... like 98%. So somehow the HA rounds things off. I don't quite understand how that works but I'll take it!
By the time I get my next upgrade, I will be almost 70. A sobering thought to imagine how isolated I'd have been for years already, without my implant. Not to mention I'll be almost 70! argh! This fabulous thing has improved the hearing of thousands over the whole world in the last 40 years, improving all the time, and I'm one of the lucky recipients. I suspect things will get even sleeker, perhaps totally internal, before even my next upgrade. I know they're already working on that.
Time will tell. I'm so lucky and so grateful.
p.s. Please ignore the weird layout... Who the hell knows how to do things when the draft looks perfecctly fine!
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