Wednesday, April 2, 2008


Well… It’s done.

I’m now reimplanted. I have a crazy new hairstyle, and a lovely big scar. Cochlear Implant operations done these days are very different to the ones they did 15 years ago when I first had mine done. The incisions are much much smaller – a quarter of the size. Unfortunately though, on me, they had to open the original incision and do the same scar otherwise it could have cut off the blood supply to the flap.

Hope this doesn't put you off your dinner!

I was nervous right up to the time they put me under . That took a while as my veins are difficult and as per usual they spent a bit of time looking for one. I vaguely remember just quietly going to sleep. I don’t remember anything else until l what seemed like late afternoon (by the light) when I have a vague recollection of someone telling me that everything went well. I woke up again when it was dark and thought perhaps I was hungry, then knew nothing until morning.

I woke up to pain and got a blue pill. I felt vaguely dizzy – not quite right. The nurse told me that I had to get up and have a wash . I don’t think she was nurse at all. I think she was Hitler dressed up as nurse. She told me I had to be gone by 10am as they needed the bed for the next patient. While I had a wash – she just pulled my hospital gown off. Grabbed my bra, swung it round me lasso style and did it up. Then she grabbed my tshirt and put it on me while I was heading back to bed.

My surgeon came round at 8.30am and told me the operation was successful with 17 electrodes in. Wow – that was way more than I was expecting and very good news. We discussed the possibility of me going to North Shore hospital rather than home, but decided on home.

After he had gone the nurse pulled down the blankets and put my skirt on me. I kid you not – she was determined for me to leave. My mother arrived. By this time I was crying with pain and really not feeling right. The surgeon sent me to Remuera to have an x-ray. I barely remember getting there but was really crying with pain now. Back to the surgeon who quickly looked at the x-ray and said go home and sleep, feet up, and take panadol. Yeah right – I knew panadol wasn’t going to help much.

Got home – panadol, feet up, outstretched on couch. I still hadn’t eaten or drunk anything since 6am the previous day , and didn’t want anything. Mum fed me regular panadol and antibiotics. By 4pm I was throwing up uncontrollably, couldn’t open my eyes, couldn’t move so an ambulance was called and I was carted off to North Shore hospital. I ended up being there for two weeks, very dizzy, and very sick. The doctors think the operation or anaesthetic might have set off my ongoing vertigo problems, however thank goodness it has resolved for now and I’m back home.

Everything is healing nicely now, except my hair is growing back gray. I emailed my surgeon how I felt this was unfair, that he should have injected those blonde cells back into me. He called it divine retribution, because when he took over my case management he had no gray hairs!!!

Ever since the surgery I’ve been getting tinnitus in my ears, particularly the left one - the non implanted ear. It’s driving me nuts. Now usually tinnitus is a ‘ringing’ in one’s ear, but I have a full symphony orchestra in there. If I could request tunes, that would be good too, but no – I get lucy in the sky with diamonds for 2 hours, followed by bolero for two hours, followed by the nutcracker suite (no smart comments please) then it changes to the Tijuana brass brand, You are my Sunshine, Oom Pa pah. It’s like a CD I can’t switch off. It’s a little better today –more soloist instruments than full orchestra, but occasionally the full string section lets loose. Lucy in the Sky of Diamonds played for most of the day. It’s onto Bolero now though! Gah!

I believe this phenomena is called Musicophila and Oliver Sacks has written about it. I am going to try and get the book to read as it seems fascinating. Either that, or the surgeon misplaced his MP3 player during surgery!

Meantime – I’m totally deaf at the moment. Not one itsy bitsy little sound gets through. None. Nada. Zip. I thought it would be really hard to lipread without sound but I’ve found it much easier than I thought it would be. I rarely miss things, but I do have a Magna Doodle toy as a backup when things get tough. Strange though when I introduce it, very little communication ensues afterwards as the person talking to me becomes engrossed in drawing pictures on it!!

My ‘turn on’ or ‘switch on’ or ‘activation’ is this coming Monday so I don’t have long to wait. I wonder what I’ll hear.

Anything at all?
Squiggles of sound?
Orchestral music?
I guess I just have to wait and see….

Watch this space!


Bron said...

Perhaps you have a Swiss Army model implant now complete with iPod and they forgot to tell you! (well you know - it's impossible to buy a cell phone these days that doesn't come with an SLR camera and dishwasher....)

God, don't give the Magna Doodle to me tomorrow. I love those things. So it might mysteriously disappear... although actually now that I think about it my Palm PDA has a kind of Magna Doodle feature on it. But there is something much more nostalgic and fun about the real thing. :-)

Henry Kisor said...

Robyn, my hat is off to you. Not only have you undergone a chancy operation and lived, you've documented it visually on your blog! I wouldn't have the courage to go public in such a fashion.

I'm having a laminectomy and spinal fusion in a couple of weeks, and that will give me a butt crack that goes halfway up my back. No, I won't let you photograph it! :-)

Anonymous said...

I was wondering where you were! That nurse sounds evil!

I hope to see that you get to hear from that ear soon!

Anonymous said...

Gosh youre so funny! Thank you for sharing your story and the uh of your head. This is definitely gonna give more ammo to those anti-CI Deafies. Haha.

Hope the tinnitus will go away soon!!

An ASL Deafie with a CI

Paul said...

What a time you've had - especially that Gestapo nurse! Glad you survived it, and hope your switch-on goes perfect.

Deb Ann said...

You're a very brave girl. Hope everything is going well and keep us updated.

Rachel said...

Congrats on your reimplantation! I surely remember the pain and dizziness after my surgeries, but it's definitely worth going through it just to get the hearing back. I'll be eager to hear what happens at your hook up! Just curious - Why was the surgeon able to insert only 17 electrodes? In any case, I think you'll do fine with 17 electrodes as I heard that CI users who are living with less than the number of provided electrodes are doing well. My sister has one electrode turned off, and she's doing fine.

Anonymous said...


Sorry about what you had to go thru...I have stated with other comment box that pre 2005 implanters are obsolete. So I do not support these times whom have been implanted however, 2005 and after is far less evasive surgeries and advanced sound quality.

it's a touchy issue for everyone but time has change where we grow to adapt it.


Anonymous said...

Can you put a black mark on the area so to show exactly where it's being drilled.

Anonymous said...

isn't it odd that raychelle harris in one of her vlogs say that CI is a MINOR surgery. take a look at your picture of your recent surgery. it looks like a MAJOR one to me.


kw said...

Hi Dearie-- Goodness sorry about all the pain. Your daughter kept us informed and I was glad for that as I was concerned.

I haven't read Musicphilia either, but have read about the book. I can only say it sounds AWFUL. Does it help if you try to hum something else?

Tell Bron she got me hooked on computer jigsaws. OY!

Anonymous said...

Go on Henry - be Brave - I'm sure many many people want to see a huge butt crack going up half your back. I'll come and make a special trip to Chicago in July with my Camera otherwise!


Anonymous said...

Hi Rachel - 17 electrodes should be fine. I had 16 working before my old one stopped working, and with 16 I had 98-100% open set sentences - ie - I heard pretty much normally with no background noise.


Anonymous said...

Rachel - forgot to tell you - the reason they could only get 17 in was when they took the old implant out, 6 eletrodes wouldn't come out, deeply embedded in scar tissue that they couldn't remove.


Anonymous said...

Rachel - forgot to tell you - the reason they could only get 17 in was when they took the old implant out, 6 eletrodes wouldn't come out, deeply embedded in scar tissue that they couldn't remove.


Anonymous said...

Hi Freezepop - cochlear implants made before 2005 were still great. I had mine done in 1993 and i had near normal hearing 98-100% open set. So yes there have been medical and technological advances, but I'm glad I had near perfect hearing for 15 years.


Anonymous said...

No I can't put a black mark showing where it was drilled. Because a). I have no idea. and b). For me there was no drilling. they took the old implant out, and re-inserted another one.

It looks much worse than it is :)


Anonymous said...

Hi JD,

Cochlear Implant surgery IS minor surgery. The reason my scar is big is that they had to use the existing incision from 15 years ago as I explained in my blog. It looks much worse than it is.

If it was major people would be staying in hospital more than one night - most people have them done and go home on the same day.

If the doctors had made the new smaller incision on me, they might have cut the blood supply to the scalp - which wouldn't have been good - which is why they used the original!!


Li-Li's Mom said...

congratulations Robyn, you ARE so brave!

Wow, that's quite an incision, you weren't kidding ... I saw so many pictures of various incisions and watched a video of CI surgery before we brought our little then-18 month old in, but when I saw that long incision on her little head -- even the small kind, holy cow I thought I was going to pass out. A week later, though, her hair was already growing out, ( she's a bit of a wookie that way ) and the incision was looking tiny, just as promised.

5 months later, she still has quite a funky hairstyle, though: I'm sure you'll rock that look beautifully! Heal well and be strong, great big well wishes for your activation!

Anonymous said...

Oh bugger.. I just wrote about 500 words and clicked something by mistake and lost the whole lot!

Now let's start again.. boy what a story!!!
.. and.. Damn bloody nurse.. I hope she gets to be on the other side of the bed one day.

All the nurses were wonderful when I was in hospital. .. and yes I can have the same trouble with people finding suitable veins .. but once they get me I go out like a light.. and I think I remember telling you they labeled me as a "flight risk".. literally.. they colour code the theatre gowns!!!

I am nervous for you about Monday so I can't imagine how you feel.. excited and scared all at the same time I suppose.. however, if you can't hear anything.. I suppose it can only improve.. so good luck.. (typed good lick fist.. that too if you so desire!)

I hope the tinnitus will subside.. I don't know much about it.. and I suppose no one can give a call on that.. do you know if it is likely to ease?

Well good luck I have to ring my very confused mum.. cya later.. maybe I can chat in the morning.. however I am chasing my tail constantly lately.

Big hugs, Liz

Colin Anderson said...

Hi Robin,
You should have hit that nurse in the ear and then asked her if she could hear ringing. When she said yes you should have done it again in the other ear and asked if the was ringing there as well and was it at a different pitch. I feel sorry for you as tinnitus (and being deaf) currently drives me mad that why I would have liked you to hit her!

I'm tentatively scheduled for surgery for my first implant, last week of May and second one two weeks later.

Did you have Dr Gunn. He seems so gently and kind.

I'll ask you for the name of the nurse just prior to surgery. This is all big and scary for me. Just a few months ago (10) I hade perfect hearing. Now my ears are only any good for keeping my glass's on and keeping the processors out of the dirt!

Good luck with the switch on. I will be watching progress.

Anonymous said...

Hi Liz,

The tinnitus should settle down once I'm hearing again :)


Anonymous said...

Hi Colin,

Yes Robert Gunn is my surgeon. He's great. He blames me for his gray hair!!!

I don't know the name of the nurse, never got it, but i'm sure she won't try and lasso you with a bra so you'll be fine :). If she does well - should I be worried?

I'll keep you posted with the switch-on - just four more days ;)


Abbie said...

There you are!!

Pardon my french but holy shit thats a big scar! I have been sitting here wondering where you have been and I had all the worst case scenarios along with the best but geez...

You have a knack for keeping us in suspense here :) I'm glad you are back and feeling better but golly you were put through the wringer!

David said...

I checked your blog DAILY!! So glad you are ok, and so happy to see implante went well. Robyn you are my idol!


mjc said...

WOW that's a big scar! They've sure changed after 15 years = Linda's photo from a few years ago shows a much much smaller incision. So very glad you're OK and the vertigo is gone.