I've been having more problems with my implant. When I was switched on in early April, it showed such promise. I had 17 out of 22 electrodes working. My test scores for listening without lipreading were 94%, which was so exciting, as back then - as I would get used to the new sounds, it would improve. How wrong I was.
Nearly very month, I've had an electrode switched off. What would happen is that I would be remapped. Then a week or two after a remap, I would notice twitching sensations in various parts of my head. In my temple, or the back of my nose, or in the back of my throat. When this was tested, I would hear very little from it, and even scaling back the volume didn't stop the twitching sensations. So one by one the were turned off. I got down to 14 electrodes.
We decided to try the CIS speech strategy - a higher stimulation rate and often used for partial insertions. This uses 12 electrodes only and for the last 2 or 3 weeks I've been using this. It seemed quite promising as I was getting a better sound - less nasally than it was, but still there, but still not enough clarity for the phone or TV.
Then last week I noticed that a bird sits and chirps outside my window from about 3 to 5pm every day. And I noticed that ever time it chirped, I got a painful sensation from it. So I knew immediately that i was going to lose yet another electrode.
I asked for another appointment, and also asked if I could have an x-ray to make sure no elecgtrodes have somehow moved out of the cochlear. Highly unlikely but for peace of mind, needed doing. I'm still waiting for the results.
My appointment was today. Sure enough - another electrode was twitching in my temple and has been turned off. I live in hope that this will get rid of the painful bird chirps, as I don't think guns in urban areas go down very well! (I've told my cats but they've turned a deaf ear!!)
We wondered about going back to SPEAK - the lower stimulation rate speech strategy at 250hz which I had for 16 years with my old implant before it failed. We wondered if I was simply not coping with the high stimulation rate. So - a new map with the SPEAK strategy was done. It's on Monopolar, and I have a total of 13 electrodes. (It would have been 14 if I hadn't lost that other one today).
Because that electrode still twitched even on the lower stimulation rate, then I suspect it's not the actual stimulation rate that is causing it. We shall see.
A recap on stimulation rates - SPEAK is 250 hz, ACE is 900 hz, and CIS is 1100. with this new implant I was originally switched on with ACE, and recentl went to CIS. Now Im back with SPEAK.
Going back to SPEAK is like being switched on all over again, like I was 16 years ago in 1993. The sound is awful. My voice souds like it's in harmony, but very out of tune harmony. Like my voice has separated somehow and is two voices in one. People sound like they're talking in buckets, very dalek sounding like from Dr Who or robotic sounds. I had this when I was originally switched on in 1993, however it righted itself ver quickly - within 24 hours. It will be interesting to see how long it tkes me to get used to it this time round.
The good thing about SPEAK for me, with the higher stimultion ACE & CIS, the first six electrodes (low tones) were perfect - ver beautiful sound. The next six were very quiet, and they simply wouldn't go up much in volume at all. Basically the top six electrodes sounded totally crap. With SPEAK, all 13 electrodes are now the same loudness, and it's much more even sound quality. It's also tripled m battery lifed from 33 to 91 hours.
I am just so frustrated though. Sometimes I feel like sticking the processor in the drawer and giving up. I've come so close to that several times. A shrug of my shoulder, and I think 'oh well - my CI days are over'. Then a few hours will pass, or I'll get a good sleep, and I realise that no, it's too early to give up yet, especially while i have some sound If it was good at switchon, there must be a way to improve it again somehow.
So once again, I'm on DAY One of a new implant. This time with a new speech strategy to learn sound all over again.
Watch this space...