Sound has been getting more and more painful, and I feel movement again, so on Friday it was back to the Implant team to get my electrodes adjusted again. Rather than the electrodes being switched off, they were able to turn the upper six right down. Which doesn't leave me a very good dynamic range as most of those upper six comfort levels were actually on very soft or just hearing.
I'm so upset about this. Spent Friday afternoon and Saturday in tears, but am gradually accepting it now. What's especially hard is that at switch-on it was all so promising. With all electrodes inserted working and 94% open set sentences in quiet without lipreading in my first week. From there I had only hoped to improve. Instead I keep going backwards. That too would be okay if only it would stop going backwards so I can then work with what I have and go forwards again. Already - just a few days later, I have started to get pain from sounds again.
I can accept that this implant will never be as good as my old one. I knew that right from the word go. But I'm also not about to give up and become a hermit. My extravert personality will not allow me to do that. Instead I want some answers. Answers that I wasn't getting from anywhere else, so I headed to Google, and entered Facial Nerve Stimulation and Cochlear Implants. This is what I learnt from reputable sites such as pubmed and other research sites.
1). Deactivation of electrodes is not normal, nor is it common. This is taken over all implants, over all three brands. I can understand that as most of my electrodes were in good order with the last implant I had before it failed. I think two were turned off because of an electrical problem about half way through it's live after about 7 years.
2). Once five electrodes have been switched off, then the implant should be considered as an 'impending failure' (I certainly hope not in my case)
3). Facial nerve stimulation (FNS) is a known adverse affect in cochlear implants. It is more common with people with cochlear damage or scarring - such as otoschlerosis of the ear, or reimplantation. (This makes sense to me).
4) For reasons unknown, once one electrode starts the FNS and is switched off, it can spread through the electrode array. No one knows why. (This is what is happening with me).
5). I also read of a case study of a 60 yo man. He had a Cochlear Implant, and had 17 electrodes inserted (same a me). He had Otoschlerois of the ear so had some cochlear damage or scarring needing a bit of work to get the implant in the first place (I have some scarring due to the first implant). Initially like me he did really well with the 17 electrodes, but started getting Facial Nerve Stimulation needing electrodes to be switched off. It travelled down the electrode array (like mine) He ended up with 12 electrodes, but only 12% speech understanding without lipreading. (I have much more so far which is good). It was decided to reimplant him (heaven forbid - I don't want this), in the same ear, and after six months, no more FNS and he was back up to 96% scores. (I do want this though).
6). The pain that goes with FNS, I couldn't find much on Google for that - so I still have questions.
I'm Scared though. Very scared. My biggest fear is that the team will say 'there's nothing more we can do for you'. A very real fear as I don't have spare ears. I only have ONE.
Anyway - I'll end with a paragraph of one article I found...
'The most common reason for an electrode to require de-activation was found to be facial nerve stimulation, with poor sound quality and pain also being very common. Other reasons included absence of auditory stimulation, vibration, reduced dynamic range, throat sensations, absence of loudness growth or dizziness. The occurrence of these reasons along the electrode array was examined, more basal electrodes being found to be non-functional as a result of having a small dynamic range or poor sound quality. Pain and vibration were found to occur throughout the array and the more apical electrodes were found to be non-functional as a result of facial nerve stimulation. It is suggested that the electrodes at the basal end of the array are likely to be extra-cochlear or are at the site of the most cochlear damage, whereas the more apical electrodes lie in closer proximity to the facial nerve.'
8 comments:
Oh, dear. Sorry to hear that you are dealing with this. It is ok to be Deaf. If your CI doesn't work, being Deaf is still wonderful. Many of us don't even want CIs. We are comfortable with silence. We love ASL.
Hi Robyn,
I understand how you feel, only I have the back up of my second implant. Google NAS (non auditory stimulation) you will find that interesting as well.
Some people seem to like the sound of their own voice, ours hurts! Testing my last MAP with ‘SPEAK’ strategy made my eyelid twitch painfully on 10 out of my 12 electrodes.
Thanks also for mentioning Dave, I have just found and read a lot of his blog.
I am stunned, by his sudden descent to deafness by ototoxic antibiotics which almost mirror mine, and how he is hanging in there as his wife holds to a thread of life.
We saw a more-pork owl on our fence when we came home the other night and thought of you, and your camera!
Kind Regards
Colin
Hi Anon,
I realise that many deaf people like being deaf, and do not want CIs. But you must remember that I've always lived in the hearing world, and I want to hear. I already sign (NZSL), but unless I completely immerse myself into the deaf community, then signing doesn't get me anywhere.
Most of my friends are hearing, as are all my family, and it's those whom I want to communicate with as thats where I spend most of my time.
Also - most deaf people can wear hearing aids and get some sort of sound to aid lipreading. Without a CI I get nothing so I won't get any clues at all. Much much harder.
Cheers
Robyn
I'm using SPEAK at the moment and it doesn't give me much clarity, but going back to cis now is ever worse - so I'm really confused to waht strategy I should use.
neither sounds pleasant in any case.
Glad you found Dave's blog - I thought you were already in touch for some reason.
I must come down to Rotorua Soonn - but first....Blenheim and the wine festival next week - one more week to go - hic!
Cheers
Robyn
This is why I am scared about getting a CI. I know ASL, the majoirty of my life is surrounded by hearing people, being raised hearing.
However I have accepted the fact that I will not hear again one day, and have prepared those around me for that day.
Good luck.
Hi Anon,
If you go through my blog, you'll find that for the first 16 years I had near normal hearing with my cochlear implant.
Implant failures are very very rare, but they do happen. I'm glad that I at least had 16 years of near normal hearing, than none at all for that time. My first one failed simply becuase it was 16 years old and old technology.
So by grabbing onto all the negatives, rather than looking at all the positive data out there on Cochlear Implants, then you're not doing yourself any favours.
For every one failure, there are literally hundreds of successes.
Cheers
Robyn
So sorry to hear of your problems Robyn. As you know I had 5 electodes shut down on my first CI and my second implant ended up with no working electrodes. They re-implanted 2 weeks ago and only got 8 of 16 electrodes into the cochlea area, so it will be interesting in the morning (activation day) to see what happens.
David
Robyn,
Why is it that Deaf often hide behind anonymity. I would agree that is OK to be Deaf, if that’s the way you are born and haven’t had the privilege of cochlear implants. I assume that the Deaf must have a wonderful world of silence, however, you, like me don’t have a wonderful world of silence when our processors fail or are removed. We are suddenly severed from the other living members who contribute to our being, and we can’t experience silence, just an unbearable increase in tinnitus and vestibular assaults.
Hang in there. Have they tried increasing or decreasing the ban width as well as the refresh rate within your MAP’s. I’m sure there will be many more combinations to be tried. Jeremy also suggested reducing the threshold and adjusting the refresh rate. I wonder if MP3000 will assist because in theory it will provide the same information vis less current.
I have had a good day today with just our lovely Bichon and I, and wearing just one processor to give my head a rest. The up side for my MAP is that I can’t raise my voice at the kids as it hurts me bad. Check out the blog I’m watching on my home page. The lady has a video of unwanted facial nerve stimulation.
I have been listening to a grey warbler singing for the entire world and because it can. My second implant picks up the warble very well. The more-pork (owl) sounds like a bull frog on steroids though, quit scary!
Cheers
Colin
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