1) There will be a lot of tests before you are deemed ‘eligible’; There are MRI scans, CAT scans, speech perception tests, hearing tests and various other assessments you will have to go through before they can accurately assess you against the NICE criteria.
2) It can take a long time to be accepted onto the CI programme; Depending on your own hospitals protocols, it can take months for the assessments to take place (I had an appointment for every separate assessment and had to travel 20 miles each time).
3) You may not be able to choose your device; Generally, patients are able to choose their own device but in certain circumstances, for medical reasons they are not able to. If this is the case then the surgeon will assess your needs and choose a device for you based on those needs.
4) You will need to get a Meningitis jab before your operation; This is a prerequisite for you having your operation and you will not receive a date for implantation until you have had the jab. This is because there is a slight (and I do mean slight) risk of contracting Meningitis.
5) You will experience some pain after the operation; I would be lying if I said you will experience no pain whatsoever – after all, it is an operation! You will be prescribed antibiotics (to help with inflammation) and strong painkillers after the surgery.
6) You will be scared to sleep on the implanted ear; for at least 6 months after the operation I only slept on my left side for fear of moving the implant in some way – I still occasionally worry about it but I have gotten used to it now.
7) There will be a period where you won’t be able to hear a thing; Immediately following the operation and before the activation, you won’t have a device in the implanted ear so your hearing will be dramatically reduced for those 3 or 4 weeks.
8) There will be a lot of hospital appointments; Even after all the assessments, there will still be lots of appointments. There will be one a week or two after your surgery to check the wound is healing and there will be another MRI scan to check the implant and electrodes are in the correct place, and then all of the audiology and speech therapy appointments.
9) The switch on process can be disappointing; It is very important to not get your hopes up for the switch on process as many people are left disappointed. Many people do not hear anything during switch on but go on to receive full benefit of their implant – it takes time and patience.
10) You will be a patient at the hospital for life; You will always need the hospitals assistance, whether it is because your device needs upgrading, repairs or your map needs adjusting as your needs change,
11) You will need speech therapy even if your ‘speech’ is fine; The speech therapy part of rehabilitation focusses on sounds, words and sentences that are difficult to understand and easily misheard. It is an incredibly important part of your progress.
12) You will need to do ‘homework’; Just attending the speech therapy and audiology appointments is not enough. You will need to work on your rehabilitation at home too – your audiologist will give you some material/websites etc that you can work on at home. Even listening to the TV counts!
13) You will always be hearing impaired, no matter how well you adapt; Even if you receive full benefit from your implant, you will always have a hearing loss and will at some point struggle. You will never have “normal hearing”.
14) You may need more than the “average” audiology appointments; This isn’t a bad thing. Everyone’s brain adapts at different speeds, where one patient may only need 10 appointments, you may need 20 – don’t be disheartened by this – the end result will be worth it.
15) It will take time to adjust; At first sounds will be different, even alien to you – especially if you have never heard through a device (hearing aid or similar) before – but this will gradually become “normal” it just takes time.
16) You won’t have the same experience as another CI user; As I’ve mentioned before, everyone is unique and reacts differently – try not to compare yourself to others.
17) You may experience twitching or some facial paralysis; the implant is very close to the facial muscles and can affect them. Some have experienced facial paralysis or twitching (I had twitching in my right eye, cheek and chin) – do not panic – this can often be rectified by simply adjusting the mapping of the device.
If you would like to learn more about the surgery and aftermath, read my post here.
The Invisible Disability and Me 
This is very good and covers most things. I would like to add that you can lose your taste on your tongue. Still waiting for my taste to come back on one part of my tongue but is improving after 6 months.
The magnet can itch, mine does but I don’t mind and it is getting a little better too.
If you join Hearing Link they have some fabulous volunteers that you can be paired with to support you in the early stages with little glitches around the technology that you don’t know who to ask about. The audiology department are only really interested in how you are hearing and keeping the mapping on the processor as good as they can get it. But when the mini mic doesn’t work or the streamer stops you have to either go to the manufacturer or your paired volunteer might have experienced exactly the same problem. I also ask my pal about hints and tips for telephone use (which still scares me), other sounds that may or may not be good and just generally keeping you focused too.
The cochlear implant has changed my life and benefited family and friends alike. It isn’t just you that has this journey so keep sharing it and let everyone know that communication is so very important and when you are deaf that is what hurts so much.
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Such an informative post. Very detailed.
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I wear hearing aides and I’m so tired of struggling on clarity. I hear everything just not clear. I called Cleveland clinic for a evaluation to see if I qualify for surgery.
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