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.'