My CI is revised!!

Cannot believe it, but didn't post AT ALL in 2025?! Must do better, Caroline.

Anyway, this is an important one as (see title) my CI has been revised... and as this blog started out documenting my CImplantation (see what I did there?) with only a few scattered posts about CI in the following years, I thought I would bring it all up to date.

The thing is, I've said from early on that my implant seems to be moving. I brought it up at every checkup and especially at requested visits to the ENT when I asked specifically BECAUSE it damn well HAD moved but... it was always kind of put off as 'nah, not really, not much, not significantly, not hindering you, blahblah, come back in two years'. 2nd-to-last time, he said, 'not a good idea to do anything, you might lose the good hearing you have and... more blahblah, all negative, best not mess with things'. Last visit, I asked do you really not think it has moved then? Because funnily enough, it was at least 2 finger widths above my ear to start with, and it's now right behind my ear!'

More negative talk about it, so I told him (he's very approachable, have to say) 'you shouldn't be so negative to patients like me! I understand that you are covering yourself to ensure I don't have the wrong expectations, but this thing has migrated about 3 inches; it cannot be denied. Where will it end up?! in my neck?!' 'Can't go further ('you said that before too') 'No need to mess with it' then 'ok, will discuss it 'in the team''(I really did rather nag). I honestly think he just wanted to shut me up.

The thing is, I'm 71, still healthy, no medications or anything. Who knows how things will be in the years to come, and then they will only say, 'can do nothing about it now'! So I waited to hear what 'the team' had to say, and hoped it wouldn't be 'leave well alone' as was already written in the surgeon's report. Two weeks later, I'm put on the schedule for the op. It could have happened in '25 already, but was too short before we left for our winter sojourn in Portugal, so I got them to keep me on the list (without starting the whole check-up procedure anew), and they'd try and get me scheduled in for April/May this year ('26).

It's not like I'm excited to have them cut my head open! I just want this sorted. Yes, I hear great with my CI, but the lump actually ached at times. Then, last year, on holiday, my occular migraines stepped up in frequency... harmless, sure, but connected? Still don't know really. Then my left eye had a funny turn, and I also collapsed a 2nd time, sort of similar, both occurrences scaring the shit out of J. I don't know, could have been other reasons (what, I don't know. It's not like THEY know either!), but maybe it's getting near a nerve or something? Anyway, I was glad to hear in April that I was scheduled for the 1st of June... woohoo. Yesterday already.

So it's the 2nd of April now, and I'm all done and sorted. Well, the op has taken place at least. The jury is still out about how well or badly I will hear. Will update when appropriate. Let me tell you how things went.

I left the house at 06:30... half an hour earlier than intended, but had lain awake for hours already, so I thought I might as well. I was at the reception at UMC Utrecht at 8am for my 08:45 appointment. By 09:15, and seeing folks coming and going already, I figured it was time to enquire as I had originally had a 10:00 appointment... surely I wasn't waiting until then? It was changed. 'Nono, you're at the right place, and 08:45'. Okay. I had just sat down again when my phone buzzed in my hand. Now, I never pick up the phone. I don't hear well on it, too stressful, although I manage if necessary. No caller ID, thought maybe a cold caller, but thought I heard 'this is UMC calling...' so I rushed back to the reception desk, practically swiping an old lady out of the way, to pass to the woman there. haha. I did apologise.

I was in the wrong place!! A bit of my own fault, as I had indeed read it when the appointment got changed, but hadn't printed out THAT letter and used the 10am one for directions. BUT, the new girl on the reception hadn't noticed either, and it was writ large on her screen!! hmmmph. Anyway, a nice girl walked me to where I should have been (I would never have found it with directions, UMC is huge and took us 5 minutes to walk there!). Barely sat down there, onto a bed, BP taken (182/xx!! must have been all the agitation!) and whisked off to the portal to the OR :) Just in time, apparently. I actually think they still had me in a 10:00 slot. But all good. Intravenous thingummy inserted in the crook of my arm, various monitor stickers attached, BP cuff, puffing up at regular intervals.

Surgeon Dr Thomeer (from ENT conversations) comes to reassure me, and that it should only take 35 minutes... 'see you there'. Everyone is very nice, and of course, I can still hear. Then I'm gliding into the OR, and I shuffle onto the table where a lovely warm blanket is put over me. Thomeer asks me if I know why I'm there, and dotted my left ear with a pen when I told him. He just laughed when I said, 'and also a full implant on the right side'. Huh. It was worth a try. Then I took off my ear (my sound processor then... my HA was already left in the bedside drawer) and placed it safely in a container on my bed for later. The dreaded mask is placed over my nose and mouth, and I was just about to protest that it wasn't letting any air in! when I woke up back in the recovery room, all done and dusted. Two hours later!

My jaw hurt, and the wound was starting to nip, the more I woke up, so I was given a drip with some painkiller or other... didn't seem to even touch the sides, so I asked for something stronger. I repeated about my jaw hurting, but of course, I'm deaf now and can only read lips slightly. All I see is him phoning to ask about it, and 'no, that's not good' didn't exactly put me at ease, haha. But then she wrote me a post-it with 'all good, will get you more pain relief, but eh, you've had an operation!' Like I don't know that? Sheesh. Anyway, half an hour later, she finally came with whatever it was (can't remember, did ask). 'You might feel a bit light-headed.' You think?! I was OUT of it for at least 20 minutes. Did not like that at all! I can never seem to get 'high'... no 'oh, I like this', ever! But yeah, did dampen the pain, from a 7 to about a 4, very doable, thank you very much. And I was then 'back in the room'. I really hadn't wanted to open my eyes, haha.

Thomeer came again to tell me it had been harder than expected, which is why it took longer. But no replacement or upgrade, just all the same and MOVED it back to where it was originally. 'Oh, so you finally agree it had moved!' I asked him with a grin. It hasn't been screwed or stitched or glued or whatever because (ahem) 'not necessary', so I hope not to be back again in another 12 years!! But right now, all good. Of course, my lovely invisible scar had to be extended, so it is no longer entirely behind my ear... eight stitches, bit of a zigzag now up above the ear... but the mohawk shave is minimal and will soon cover it over. See him again once I've had a CT scan to check placement, then again in a week or so to get the stitches out.

Wheeled back to the day ward, with no mention of me not going home, so I'm hoping J is saved the trip for a visit. L will collect me otherwise, sweetheart that she is, also saving him. I'm starving by then and am immediately served a cup of the best tea ever (seemed like) and a cheese sandwich. Bliss.

Around 3pm, I'm collected for my CT scan. The run from the day ward to there was 15 minutes or more... a motorised scooter affair tagged onto the head of my bed, basically driven through the corridors, up in one lift, down in another, along miles of tunnel and ending up at the nearby Willelmina Children's Hospital, then all through there to the scanner... who knew they were connected underground? In and out of there pretty quickly and back to the ward, only being pushed this time. They don't half make up their steps there, lugging big beds about too!!

My BP is regularly taken, but when she said it's great, 107/xx I said, take it again, please?! It hadn't puffed up at all, so NO idea what she had done. 120/xx okay, that'll do. Silly girl. Honestly, your life is in their hands!

By five, Thomeer comes again. CT scan looks great, you can go home. Woohoo. I'm to wear my sound processor for five minutes tomorrow (today). The audiologist was in the OR and measured things to the same settings as my last audiogramme (not actually sure I haven't had things adjusted since then, but...),  then he'll see me at my next appointment for stitches coming out and further checks at audiology. So have to wait on the letters with appointments. 

Got J called off just in time, and L had the car booked already, so I'm duly collected (wheelchair to the car, haha), and I'm home around seven-ish. We were just leaving when I realised I should ask if the bandage needed reapplied as it had fallen off during a doze (it did). Then we were half way out of the hospital when I realised the intravenous port was still in my arm. So we had to go all the way back to get it removed. (It was bedtime before I found the three monitor stickers still on me, haha). Meanwhile, I'd had an unordered hot meal, actually quite nice, but had trouble opening my mouth far enough... jaw still sore. Further pain about a 3. Paracetamol is working okay, thank goodness. Nurse asking me about current meds (I'm not on any) as listed in my file... jeezo, things from years ago for various reasons I can't even remember. Must get the surgery to delete all that. If it even had a corresponding date, or why prescribed, might help! I seem to remember that online thing being useless really... listing oooooold painkillers for one thing, (probably for my broken wrist 10 years ago!) and NOT listing other (important) things, for another. Hmmph... maybe up to me to let them know, but bad show really. You need it to remember things at all - or well, I do!

So, it's now the 2nd of June, and I slept pretty well, even on my operated ear. I took off the turban affair even though they had said to keep it on 'for any bleeding', but there is none, and it wasn't tight anyway, so it rode up on its own. I had left the gauze stuck to the wound, but that was off when I awoke this morning, revealing the 8 stitches. 

I feel okay, not as fragile as I sort of did yesterday. Taking it easy, I lay in bed until 2 after being served a lovely breakfast in bed about 11. Jaw is still a bit stiff, like I've been punched a couple of times, but I'm guessing that's with all the pulling about, so I'm not worried about it. No bruising as yet, and I'm told I won't get a black eye, but they said that last time, and I did, after a week!

I tried my processor and couldn't find the magnet on my head, so I thought perhaps still too swollen? But then I tried my old one and found it... definitely higher and further back. BUT... not sounding great! Hmmm. No panic. Tried my Rondo3, sounding the same as the old one... very Mickey Mousey. Will try again later now that I know where to place it, haha. Maybe just needs to 'normalise'? Hope so, but I have faith it will, or it can be adjusted. I didn't even think I could wear it at all yet, so not worrying... yet.

I will update this here when I know more, but for now, suffice to say I'm happy enough. My sister is scheduled to receive her CI shortly, and I know she's nervous, but I'm sure it will go as well for her as it did for me, and I'm happy I'm able to let her know how well this part has gone, too. Slightly unscheduled, as it's 'not supposed to move!' but ach, sorted now.