The last couple of weeks have been a bit of a struggle with my new Cochlear Implant (CI). The reasons are numerous, and some of them complicated. However, today I went back for another remap, and I'm a happy chappy again.
The problems I was experiencing started two weeks ago. I noticed at the two month post switch on mapping that I wasn't hearing well, however, the new map didn't seem to help at all. Everytime you are mapped though, there is a period of 'getting used to it' so I just accepted it and hoped it would improve. It didn't, so four days later on the Friday I went in to have it tweaked again.
Already there was a huge change in my sensitivity to high pitches. What was fine on Tuesday, was unbearable on Friday. So those electrodes were turned down - particularly Electrode 7.
Still it wasn't right. Certain sounds were very uncomfortable - a car starting outside while I was inside, hurt my ears. The ironing board being put up also was painful. The following Friday (last week) I was back at the clinic, but to answer some questions for two people contemplating getting an implant, but I hoped to be tweaked yet again. Unfortunately, my audiologist went home sick so nothing could be done.
This was probably a good thing. Good because - that night, when my friend Bron came over, I noticed I couldn't hear her. At all. I could hear other things, just not her voice. Up went the volume to 9, and the sensitivity went from 10 to 16 before I could hear her at all. Thats a HUGE adjustment. This lasted all friday night, and all day Saturday and Saturday night. Sunday it was back to normal - almost.
Fluctuations in hearing has been around for me since I was 10 years old. I have menieres disease, and although my vestibular system has been destroyed to stop some of the symptoms of menieres, I still get the hearing fluctuations. So it was good I wasn't remapped that day so when hearing wobbled, then settled, it didn't destroy or change a new map. Instead I waited until today to be remapped.
Before I went in to my appointment I tried to listen to TV - but could only hear one or two words, and the sound quality was awful. I started feeling quite tearful as I'm frustrated ith the sound I'm getting from the Cochlear Implant.
This is stupid, because I'm expecting way too much far too soon. Even though I've been implanted before, this one is only at two months, so it will take some relearning on my part. I'm being impatient because I want what I had with the last implant NOW! I want to hear the TV without captions. (Not everything is captioned in New Zealand).
Anyway - the new map is much better, and even though only a couple of things were changed, and only slightly, it has made a HUGE difference to the quality of sound and what I'm hearing. Things are louder again, and I'm sitting watching TV and can hear a lot more of it without the captions. I'm feeling happier - the happiest I've been with it for two weeks.
There's still a question mark over electrode 7, but when we switched it off, it made no difference to the hearing. I've kept in on at this stage, but I suspect I'll need to turn it off eventually.
Be Patient has to become my mantra for the next 12 months. This is going to be hard - patience has never been one of my virtues. I've always been a 'I want it NOW' person.
I'm hoping my hearing won't wobble while in the USA as I want to hear while on my holiday :)
Cheers
Robyn
Well, you can always look at it this way - I talk a load of rubbish half the time so not being able to hear me has to be a good thing!!!!
ReplyDeletePerhaps they can make a special "Bron" setting for you too which is essentially the same as mute! And then you could say to me "Oh sorry Bron, I can't hear you properly, I'll just turn this thing 'up'......." Click! :-)
I have been following your blogs, I find your description of positive and negative experiences about new implant and remapping valuable. It is something all people considering implants need to be aware of it.
ReplyDeleteI do not think you are being impatient considering the immediate need for being able to communicate with people, enjoy t.v. shows and time length of getting adjusted with new implant to me is pretty lengthy.
Hi Anne-Marie,
ReplyDeleteNo - Im definitely being impatient. I was told right at the beginning, from docs, audiologists, and people who had been reimplanted, that it will take at leasst 6 to 8 months for me to get used to it, or to start getting back to where I was. It's only been 2 months so it's very much early days.
Even when I was implanted back 15 years ago, it took quite a few years to get to near normal hearing. Nothing comes quickly, it's just the brain that has to get used to things.
So I'm doing okay. It's not a cure for deafness, but it's still better than having nothing at all, at least in my opinion.
Cheers
Robyn
I am with ya. Wore hearing aid all my life, could hear pretty good til few months ago. Had an increase hearing loss to the point hearing aids do not work. I miss hearing sounds.
ReplyDeleteI will be meeting with my surgeon before my CI surgery in August.
It's hard not to expect too much. I am also an impatient person. Thanks for sharing your experience. This helps me not expect too much. Smile
Hi Robyn
ReplyDeleteMy hearing fluctuates with my CI too and it is definitely related to hormones. I know you said in an earlier post that you are menopausal. This could be effecting you too. Sometimes my hearing fluctuation is really bad and I've been in tears over it. But it is not the implant it is my body. HRT really effected my hearing. Everytime I went on a new medication or put on a new patch every fortnight my hearing went way out of kilter - really loud for some sounds and others not heard. Felicity
It took me six months of my hearing constantly fluctuating to say that I am really happy with my CI. So two months is a relatively short amount of time. Babies do not learn language in two months and that is what we have, a babies ear :)
ReplyDeleteI am looking so forward to meeting you! :) It is indeed a very small world on the internet... Wayne is a really nice guy.
Hi. I have 4 sisters. We are all deaf in varying degrees. One of my sisters is preparing for a CI. She is a beautiful and very intelligent 60 year old. Your notes are very interesting. Thank you for them.
ReplyDeleteI really appreciate your post and you explain each and every point very well.Thanks for sharing this information.And I’ll love to read your next post too.
ReplyDeleteHearing Aid