Monsters in my head

3 01 2010

I’ve had a sleepless night, worrying about the CI. I have just a few monsters in my head that won’t go away. Let’s get them out into the light of day, in order of size, biggest monster first ….

The implant won’t work as well as my hearing aid.
My biggest worry, and probably my most unreasonable one. I don’t believe it will be a magic wand and give me perfect hearing, but I don’t believe it will work that well for me as I’ve always been deaf. I keep reading about recipients who have done brilliantly but they have had hearing for some years before losing it, giving them a massive advantage over me. It’s a leap of faith and I don’t do faith. I don’t do religion. I believe in what I can see evidence of, so taking a risk like this is a biggie. Also, will my surgeon, Dr Lavy, be having a bad day and be ‘off’? Will my CI be one from the production line, not discovered to be defective until switch-on? Will they find out at switch-on that not all the electrodes work?

I am going to lose all my hearing in my left (implanted) ear.
I can hear *something* in my ear, which helps to balance my right ear, and makes me feel what I am hearing is normal as can be and balanced. I really don’t want to lose anything at all. Hearing only out of one makes everything seem skewed, and I feel like I am on drugs. It makes everything a lot harder to understand. So I am already mourning for the loss of the hearing that I still have. I might be able to retain some residual hearing, depending on which CI I opt for, but I feel that the operation will pretty much take away whatever hearing is left.

The anaesthetic.
Not that I’m going to die. might die. It’s about letting someone else pump such a strong drug into me. It’s about the going under. It’s about having someone close to me, my dad, who went under and never woke up, I still think about that every day. It’s about the sheer horror of it.

What the world will sound like Afterwards.
Not nice. Not normal. Will it ever be normal or nice again? Will I be able to enjoy music again? It’s 22 electrodes compared to 15,000 hair cells in a normal hearing ear, that difference in quality of sound really freaks me out. 22 will sound crap to a hearing person, but hopefully it will sound brilliant to me, coming from the other end.

Having a huge lump of plastic and a magnet on my head.
It will be bigger than the biggest hearing aid Ive ever had. Hopefully I can hide it with my hair. Hopefully I won’t hate wearing it. Hopefully it will stay on my head ok without me constantly having to flip it back behind my ear. Or I could decorate it and make it pretty, kind of like a badge advertising my hearing loss in the same friendly way my hearing dog does.

Facial paralysis and loss of taste.
Dr Lavy will use a monitor during surgery that beeps if he goes too close to the facial nerve so I am pretty sure I won’t come out looking like I’ve been liquified in Photoshop. But still…… and I LOVE my food, I don’t want it to taste weird or to taste like cardboard – but hey, I can stand to lose a few pounds!

Enough batteries to have my own landfill site.
I will have to think about batteries every single bloody day. Not just once a month when it runs out with a beep-beep-beep-beep and another hour or so until it dies. It will just die instantly. It will not last me a full day. I will have to remember to recharge batteries every day – at least everyone will always be able to tell when I’ve been out on the lash the night before and have been too drunk to remember to put batteries in the charger – I won’t be able to hear properly next day! If I go for disposable ones, I’ll have to make sure not to run out. But then again, this one is a bit like remembering to get food to feed the dog. Sorry, Smudge :-O

My hair will fall out.
This one probably seems stupid to all you guys reading this. Ladies, you probably understand. I have a real hate of having dirty greasy hair and wash it every day. I don’t think I can wash it for maybe a month afterwards. It’s going to look gross but I have a strategy for that – I am going to buy a buff or choob from Blacks and wear that during the day. Leaving my hair to get this dirty and greasy makes me think it will just slide out of the hair follicles …. ick.

Getting home after the operation.
A tricky one when I have no family around me and everyone else is at work. Plus I hate to ask friends who have a million better things to do. My interpreter has offered to come and take me home, however she lives in Kent and will have to drive right across London to the hospital, across London again to take me home, then across London again to get home herself. I could go on my own but will probably fall down a tube escalator while crying my eyes out, haha. The last time I had anaesthetic was when I had teeth out to make room to straighten the others. I was very dizzy afterwards, kept falling over, and couldn’t stop crying. Apparently the crying was a natural reaction to the drugs. Or I could stay overnight in hospital….. yuck.

So there you have it. My own little book of horrors. I’m shutting them back in the cupboard – for now.



24 responses

3 01 2010

Your reaction is quite normal, any operation is a worry. I felt the same years ago being told to wear a hearing aid ! Expectations have to be realistic, there are no claims an BAHA or a CI is equal to the ear, a hearing aid is nowhere near. It is balanced out by the realisation it has to be better than nothing useful at all. Really counselling should have taken place a lot more, as you seem still very unsure. JUst a bit unsettling before it takes place, a case of nerves I think, when you start to master the ‘sounds’ you get, all will be forgotten I’m sure… Funny you should worry about ‘hiding’ it, may not be a good idea, as with hearing aids if people cannot see what you have and your responses are out of proportion to what they say, they will assume a lot worse than being faced with an implant. Some won’t, who cares about them ?

3 01 2010

@MM. You make some good points, particularly about not hiding it. I am sure I want to do this because the alternative, no hearing, is not what I want. It’s just all these ‘stickies’ getting in the way. I agree that a counselling session would have been useful, but you know what NHS resources are like – I got a couple of leaflets and ‘Feel free to ask any questions’.

3 01 2010

I think anyone pre-cyborg needs to adopt a philosophical approach to it.

One is trading off their useless hearing for a computer enhanced one. The emotional and physical challenges that lay ahead for the soon-to-be-cyborg are immense. One is entering into a world of where sound is computer generated and embodied into the human psyche.

Most Cyborgs I know, say they are pleased with the outcome. They went into it, with realistic expectations. They know they are still profoundly deaf, but switch the computer on and they have access to sounds that their natural ears denied them.

The computer has offered them the gift of sounds. To hear morning birdsong, winds rustling the leaves of trees..the pitter patter of rain is seen as most sacred.

3 01 2010
Byron from Denver

I’m going under to get my bionic ear Tuesday (Jan 5). I last had a general anesetic was in 1982. I was terrified because time before this when I went under it was with ether. That was a VERY bad trip. Now it is much, much better.

3 01 2010

@Byron. Thanks – that’s reassuring. Good luck on the 5th!

3 01 2010
Howard Samuels

1. The implant won’t work as well as my hearing aid.

Nah. Most likely it will work better. No promises, as you know, but I’ve done this twice, and there is just no comparison!

2. I am going to lose all my hearing in my left (implanted) ear.

I never tried a hearing aid since the day I was activated with my first implant. So I don’t even know if there is any residual hearing, and I don’t care. It was terrible anyway.

3. The anaesthetic.

Oh, I’m so sorry to hear about your dad. What an awful experience.

4. What the world will sound like Afterwards.

Actually, things sound pretty normal to me. And I grew up with normal hearing. If I pay attention to the sounds coming through either implant, they do sound artificial. And my left implant sounds like Darth Vader, while the right one sounds like a mid-range and tweeter, missing a woofer. But that’s only if I think about it. It’s sort of like wearing colored sunglasses – after a few minutes, colors look normal, until you pay attention and notice that they really aren’t.

Music isn’t 100%, especially when there are lots of instruments playing at the same time. But it is good enough that I got an iPod, and put a stereo in my car that controls the iPod. What’s missing is the innate response to, say, a minor chord. The sound doesn’t control the emotions as easily. But it improved with a software upgrade, and more upgrades are in the works!

5. Having a huge lump of plastic and a magnet on my head.

They stay on. And if you have particularly thick hair (or skin), you can get stronger magnets on the headpiece. But hey, be a proud cyborg! AB provides different color covers. And you can get skinits that stick onto the headpiece and processor, either with one of their designs, or your own artwork! I cut my hair reasonably short to make sure everybody gets a clear view of my hardware. I know one bilateral implant user who shaves his head!

6. Facial paralysis and loss of taste.

Another small risk, but worth discussing. Before you go into the OR, they put those electrodes on your face. When they get close to the facial nerve, the monitor beeps and makes all kinds of squiggly lines. The nurse prepping me had me smile to trigger the alarm. And as for taste, most people experience some taste issues for a couple of weeks or months, or maybe longer. But it usually returns to normal.

7. Enough batteries to have my own landfill site.

Rechargeables. I still have my 4-year-old rechargeables, but they are getting a bit weak. I just got some shiny new ones as a present to myself. Yes, you have to remember to charge them. But the charger can hold 4 at a time. If you are worried about forgetting to put them on the charger after a bender, just get some extra batteries and keep them ready. Write numbers on them with a permanent marker and rotate them.

8. My hair will fall out.

My doctor had me keep the bandage on for a week, and boy, was I ready to wash my hair. Recently it seems that bandages get taken off in 2 or 3 days, frequently at home with a pair of scissors. Ask your doctor how long the bandage will be on. And while you are talking to him, ask about minimal shaving. Sorry, but doctors expect that question from every female patient. If you don’t ask, he may send you back to the beginning of the line for counseling.

9. Getting home after the operation.

I’d be happy to take you home if you send me a round-trip plane ticket from Boston. Seriously, don’t try the Tube. Even if you feel OK (some people stop for pizza on the way home on the day of the surgery) you will have a big bandage on your head, and will get a lot of stares. While we’re on the subject, don’t let them discharge you if you aren’t comfortable yet. I was able to stay overnight for both surgeries (actually, all three, but that is a different story).

Sleep better tonight – that picture is a horror!

3 01 2010

@Howard. Wow. What can I say, except thank you for the good advice. I will definitely sleep better tonight!

3 01 2010

With you sad history it must be difficult to put that thought out of mind but I have found that at night our fears creep up on us unaware. In the cold light of day they just vanish!

Just one of those things that age teaches you, but it must be unnerving to be looking at this big step for all those reasons. Did you see that SeeHear with the young lady who went though this and has some friends who are also implantees (if there is such a word!)? I can send you a DVD if you want.

3 01 2010

@Ian. I haven’t seen See Hear for some time and haven’t seen anything on CIs. Who was this person? As I may know her.
You are right, nightmares are ‘night’mares for a reason!

4 01 2010

The best advice comes from someone who’s been through the same experience, such as Howard. I think it’s healthy to sort out your worries like this. Keeping them inside can distort them (similar to that scary photo!). The only thing I’d like to add is that I disagree with your statement that your friends have a million better things to do. If they are truly friends, helping you out will be important to them. Give them a chance.
I’ll be keeping you in my thoughts and prayers,

4 01 2010

Ianilly might be talking about Thea Kyle.

Good luck.

4 01 2010

@Charlotte. Thanks – I haven’t heard of Thea Kyle so no, haven’t seen the story. Was she pre-lingually deaf?

4 01 2010

Hi, I am just looking at the vids again of that show. AFAIK it looks like she was born deaf not 100% but pretty severely HoH. Went to mainstream schooling for a bitSo probably not the same staring point as those of us ‘deafened’ later in life.

The programe takes us all the way through from when she decides through to many months later when she is out and about.

Anyway, the offer still stands – get in touch off list if you wish.



4 01 2010

Sounds useful – will be in touch. Thanks Ian.

6 01 2010

Hey, Just wanted to contribute my thoughts/experiences!
Your implant should work BETTER than your hearing aid, but be prepared that it won’t. it SHOULD do though. You won’t hear fantastically at first, it will take a while, could even take months. I received my implanted at 10 years old, I was pre-lingually deaf, I had a severe hearing loss by 9 months and wore aids. Although my hearing aids did not give me normal hearing it did give me some hearing, although it is definately not the same as an implant
They should test the electrodes in the op room while you’re still unconcious, just a quick run through but the real test would be at activation 🙂

I lost my hearing in my left ear after my surgery but I had hardly any hearing unaided anyway so it did not bother me too much but nowadays they try and keep patient’s residual hearing. Ask your CI centre about this.

I’m sorry to hear about your dad-hugs!! I was convinced I was going to die during my op, but I was 10 and it is a quite big op. I think the worst bit is the anaesthetic, you’ll be fine and come through safely.

It will/should sound a lot better, maybe not straight at first, you will probably hear beeps and funny weird sounds at first but it will get better, I promise! My CI sounds “normal” to me, but being deaf most of my life, it will be.

I am TERRIBLE at remembering batteries but with my implant(Cochlear) they last anytime between 2-8 days(depending how often I wear it, oops!!)

Sorry, I have no advice about getting home after the op. hope you find a solution!!


7 01 2010

Thanks to everyone who left a comment here and/or sent a private message, you have helped massively. All my fears and worries are gone now, and now I’m excited about getting a CI. Roll on Cyborg Day! 🙂

9 01 2010
Sheilajeanne (Jane)

Tina, actually, in my opionon, the transition is tougher for those of us who have useable residual hearing. When I was first activated, I felt I’d given up my remaining hearing in that ear, and gotten nothing in return! It’s slowly getting better, though! So, that’s the LAST thing I’d worry about.

Anesthetics these days are much better and safer. They couldn’t get me under by injection, as they couldn’t find a vein while I was awake, so they used gas. Even then, I felt fine on awakening, and was able to eat a full supper that evening, with no ill effects.

There’s not much you can do about the residual hearing. Que sera, sera. Now that the postop ear infection and fluid has FINALLY cleared up (don’t worry, this is quite uncommon, and I think it was triggered by an allergy) I do have some residual hearing, but I don’t think it’s what you’d call useable hearing. Yes, I stressed over this one, too. It’s only natural!

All the best wishes to you for your surgery date!

10 01 2010
Fintan Gaughan

You need to change friends if they haven’t offered to take you home.

27 10 2010

I have to say I have many many more questions than that. does that mean more research? I will have to see. everyday i want to get one this Christmas break, but then I don’t. this just isn’t an easy thing – too many worries!

27 10 2010

Hi Mimi, you’ll reach a point when you’ll say ‘Enough’s enough’ and you’ll want more hearing that what the hearing aids can give you, and the heck with any consequences. Then you’ll gladly reach out for a cochlear implant. It took me a while to get to that point. It’s natural to have worries of course, it’s a big leap into the unknown.

27 10 2010

It is just hard when i hear sounds so well, and with out hearing aids – but that is also sounds and such – not speech… I can hear certain people without hearing aids. but yes – big leap of faith! I have only researched since June-July. so not that long a time. might be easier for me since i have heard all my life and been part of the hearing world.

28 10 2010

Yes it requires a huge frickin plunge into the jaws of faith. I’m also where you are, however hearing aids don’t do it anymore consistently for me and worse is the inexplicable detoriation of residual hearing which allowed me to hear environment sounds (some) without hearing aids. Like Motorcycle engines, cars, dogs barking (just in time to break up a dog fight!, sadly not anymore. You should see my vet bills…) nightclubs…These environment sounds come and go as my hearing fluctutates in its death throes. I keep thinking it will come back and I will function normally in a hearing world with a hearing aid again. That was three years ago. As Tina says comes a point…well there does. I can’t believe why I didn’t consider these implants earlier-like five years earlier- because I have been told that I will get better hearing than hearing aids (and I thought my hearing was fine! never mind my pathetic speech comprehension scores- lipreading worked a treat). The problem is we are so used to living in our own bodies we don’t always see the changes – just like when we live with a partner every day we don’t notice that the beautiful thin person we married suddenly looks like a house. It happens slowly over time.
I’m ready to take that leap of faith now because there has to be more to life than these useless hearing aids. All you need to research is what brand- and Tina’s guide saves a lot of digging around, then sort your finances/insurance/national health then pick your hospital, audiologist and Surgeon wisely. The rest is entirely luck. May you be blessed with heaps of that too.

28 10 2010

Bluesky has now received his cochlear implant and he was activated this week. Check out his blog on how it went…..

9 10 2018

I’m reading this while inside a Starbucks. In your honor, I ordered a “London Fog”. 😏

Just as I finished your paragraph about not being able to wash one’s hair for a month (!) after surgery, I looked up to the Starbuck’s bulletin board and saw the following: “Why do bees have sticky hair? Because they use honeycombs.”

Oddly, this (and, of course, this blog) makes me feel better about the prospect of getting my own CI.

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