My Cochlear Implant story

Trigger · 03-09-2020 11:06pm #1

Hi folks,

I just thought I would tell my story here and if I can be of help to anyone, I am free to answer any questions that posters may have about the cochlear programme in Beaumont.

I first found out that I was hearing impared during a routine exam in 6th class 25 years ago. I was profoundly deaf in my left ear, while my right ear was fine. I was fitted with my first hearing aid shortly after. Over the next 4 years the hearing in my right ear diminished and I was left profoundly deaf in both ears by the time I was 16.

I got by in life mainly by the lipreading, the small bit of hearing i had with the hearing aids and help by friends and family. Fast forward to 2014 and I was getting worse again and what little help I got from the hearing aids had evaporated completely and during a check up I was asked if I would like to be put forward to the cochlear implant programme at Beaumont hospital. I hesitated at first as I (silly I know) was very self conscious about how I would be looked at with the implant. I chatted to my partner about this and we agreed that I could not go on as I had been and I requested referral.

I underwent numerous tests, MRI, to make sure that I the device would work with my type of hearing loss. I underwent a group information session which outlined exactly what devices where available ( there were 3 available at the time and you could choose any, this choice has now gone and one device is available to all, in fairness every device is exactly the same apart from different accessories that are available).

Just under 3 years ago I was given a date by the Cochlear implant team in Beaumont Hospital to get the surgery. The team do 3 surgeries each week on a Wednesday and I was the second slot on my day. The day itself went very quick, from going into the waiting room to being whisked down to the operating area, signing forms and answering questions all the way down. I waited for approx 10 min in the OR waiting area before being brought in to have the surgery, next thing I knew I was waking up in the ward groggy. As the surgery is classed as minor, it went perfectly and I lived pretty close by, i was allowed to return home the following day.

My Implant was switched on, on the 7th of March 2018 and since then I have had to teach myself to hear again. To be honest the switch on is not like those videos you see going around on Social media, everyone hears different things at this but mostly it’s just noise. Myself I heard clicks, whenever someone talked, it was click, click, click. That’s it, nothing else, just clicks. The progression starts almost immediately though and by the time I was in the car on the way home I could hear the indicators going and the engine hum.

The rehabilitation is essential and its hard work, I have spent hours learning sounds with the help of my partner, it takes time but gradually each sound becomes clearer and clearer until you are able to make out full words and phrases. Holding a conversation is a breeze for me these days. Listening to music has been one of the biggest things I missed during the years where I couldn’t hear a thing, now I am listening for most of the day.

There are many things that people with normal hearing take for granted, hearing the birds tweet or the kids playing outside is an amazing feeling. There is nothing in the world more relaxing than hearing the rain come down outside. There is absolutely no better feeling in the world than hearing your child’s first words, and hearing them laugh and play every day. Obviously, like everyone else, I wish he would just shut up sometimes.

While the hearing side of things has come on leaps and bounds, the ability to hear has also opened up new avenues for me due to having rising confidence in myself, this has led to a promotion, returning to college and being invited to give presentations on my own experiences to other potential Cochlear Implant users. To be able to help others who are faced with the same questions that I was asking myself just two years ago is a huge thing for me

The decision to have this surgery has probably been one of the best decisions I have ever made in my life and I do hope that anyone reading this that has any questions would not be shy in asking.

Thanks for reading

Trigger

penny drops · 03-09-2020 11:12pm

I had mine 7 years ago. Will update tomorrow suffice to say it was a superb investment for both me and the state.

Muppet Man · 04-09-2020 11:47am

Great story - very interesting. I am not familiar with the treatment, so forgive me if these sound like stupid questions (I am 100% deaf in my left ear due to childhood infections/surgeries).

If you dont mind me asking - what caused your original deafness, especially in the right ear when you were 16. You dont have to answer.

In terms of the implant - are you still only hearing "clicks", as you described, or have you thought yourself to hear other real sounds, or is it you have learned to interpret what the implant is hearing/sending?

Would an implant work for someone who is deaf in their left ear, but hearing OK in the right ear?

Fascinating story, thanks.
Muppet Man.

Trigger · 04-09-2020 12:11pm

Muppet Man wrote: »

Great story - very interesting. I am not familiar with the treatment, so forgive me if these sound like stupid questions (I am 100% deaf in my left ear due to childhood infections/surgeries).

If you dont mind me asking - what caused your original deafness, especially in the right ear when you were 16. You dont have to answer.

The doctors were unsure at the time, I did have a weak immune system when I was younger, so they think it may have been an infection that attacked my right ear without me knowing. I was put on steroids for a couple of years to see if it would prevent further loss, IIRC they built my immune system back up but the loss was irreversible. The doctors think that I may have had the loss in my left ear from a very young age but it wasn't noticed as my right ear was fine.

In terms of the implant - are you still only hearing "clicks", as you described, or have you thought yourself to hear other real sounds, or is it you have learned to interpret what the implant is hearing/sending?

The clicks probably lasted a week or 2 after switch on, but the level of rehabilitation you do quickly turns these into natural sounds. It is different for everyone though, the brain reacts differently. After about 8 months I was hearing "normally". At my 2 year review, I was getting 100% hearing on non background noise speech tests, these are tests where you sit in front of speakers and phrases are said and you say what you hear. I had 86% on background noise. And 83% at single words. Single words would be the hardest test as your brain would help to make up sentences and put them together. And this is all with only one implant and nothing in my other ear.

Every persons brain reacts differently, and while I receive the full benefit, others may not, i think I was helped as my brain had "stored" sounds from before I was deaf which helped with the rehab.

Would an implant work for someone who is deaf in their left ear, but hearing OK in the right ear?

If you are having difficulty hearing and a hearing aid is no help, it would surely be an option to investigate, the team will see whether you are viable and if you would be better off with it. I have a sensorial hearing loss, which means that the hairs in the cochlea that generate the sounds were damaged so it was pretty straightforward for me. The implant itself would be inserted into the cochlea to replicate these.

Fascinating story, thanks.
Muppet Man.

Thank you for reading and I hope I have helped

stephenl15 · 04-09-2020 1:50pm

Trigger wrote: »

Thanks for reading

Trigger

Wow that's unreal delighted for you

looksee · 06-09-2020 2:06pm

Mod Stu Redmond, if you don't want to read it, just don't. No need for silly gifs. If you don't have anything useful to say please stay out of the thread.

jayo26 · 06-09-2020 2:11pm

looksee wrote: »

Stu Redmond, if you don't want to read it, just don't. No need for silly gifs. If you don't have anything useful to say please stay out of the thread.

Hear hear.

looksee · 06-09-2020 2:21pm

Ok, back on topic please.

Spook80 · 30-04-2021 1:06pm

My 4 year old son was diagnosed with severe and profound hearing loss in left and right ears and uses hearing aids.
He has an mri scheduled for next week to check suitability for cochlear implants.
There’s still a small part of me hoping they find something in the mri that reveals his hearing is repairable and he won’t need anything but I know its unlikely and I’m prepared for the implants.

Any idea how long after mri do things move along or when he could have the surgery?
The part that scares me is what you said about after getting them turned on, how i try get a 4 year old to understand what’s going on and why can’t he hear.

lowelife · 16-05-2022 7:57pm

Myself is at that crossroads right today.

After many appointments, and information pumped into me and read. I am a matter of months now from surgery (late summer is most likely)

BUT, I am still now 100% sure if this is what I really want.

A lot like the OP my hearing loss has been progressive yet over my whole life (from birth to current age of 45)

I am with a equal loss in both ears, which at last audiogram was around 90% loss.

Now I am trying not to think about it too much but this is a life changing decision, which I am still not sure I want.

Honestly there is a vane aspect of it all with it being such bulky hardware, nowhere near as bulky as it once was but still very noticable.

Also the fact it will mean that if I wasn't happy with the surgery there is still going to be the possibilty of residual loss that will mean the little I have left in the implanted ear will mean that it could be all gone, and I will be stuck with something I may or may not have wanted in the first place.

My last set of hearing aids I was fitted with really made a difference to my life though I have to agree, with the added technology they helped the whole WFH process during covid since it was more hearing based than hearing with back up visuals like you would get in the office.

So streaming sounds to my aids was a massive help. (via phone, laptop, etc)

But still not clear if I want this....

My Cochlear Implant story

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