Tuesday, September 16, 2008

Implant Update - There's a worm in my head!!

It's nearly been six months with my new implant now. I have to tell you all I'm still struggling with it. How I long for the days of easy hearing I had with my old implant before it failed on me. Where nothing was a struggle. Where I could pick up the phone and ring my girlfriends for a laugh and natter. Where I could deal with marketing phone calls swiftly and with precision and confidence.

Instead, I still rely on slow sms text messaging, email and MSN for the bulk of my communication needs, and I quiver in fear when the phone rings. Occasionally I'll overcome that fear and answer it, to find unintelligible speech trying to tell me something. I finally get some understanding by asking questions...

"Are you trying to sell me something?"

"babble babble babble"

"Slow down - I'm deaf and i don't understand what you are saying - do you know me?"

'babble babble babble"

Obviously not -as if they did they would know how to speak with me so I can hear. So the phone gets slammed down and I get angry and upset because I didn't handle that at all.

Last week I had one who I got some things, but not others - they asked if I could ring back. Sure I said, but I would still be deaf when they did! Stupid people drive me nuts these days.

My daughter came round last week and answered the phone for me while she was here. It was yet another marketing person who wanted to speak with me. Once again it took three times before she could get to them to understand what deaf means - I could go on and on about the stupidity of people who work for sales and marketing - but this isn't the purpose of this post.

While I was travelling around America, I noticed my speech perception had got worse. I thought I also might have a worm in my nose or throat as I could feel something moving at the back of there every now and then. I had visions of my ENT surgeon pulling out something alive from there while I was seated in his chair. They weren't nice visions by any means. He once told me his worse find was maggots in someone's ears, so I guess I wondered if I had maggots growing at the back of my throat after eating something strange while on my travels.

Once I got back to NZ, I went straight in for a remap as I could hear very little. On testing each electrode we found one that was stimulating nerves surrounding the cochlea but not the hearing nerve. During testing it gave me a movement at the back of the throat and nose, and in my temple. ah ha! It was not giving me any useable sound - so it was switched off. The Maggot or worm was gone. I'm sure my ENT surgeon will be relieved as much as I was!!

After everything was tweaked, and that electrode switched off, there was a slight improvement, but not enough for me to be enthusiastic about it. I went home and got my new apple iPod going, put hundreds of songs on it, and proceeded to start to listen to music again. When I got to one of my favourite songs - Blondies Heart of Glass, the worm was back, but this time it was making my asthma worse as well. I just thought I had asthma again after four years, as it had started again while travelling around the USA. I thought it was from the smoke and pollution up that way. However, when listening to the iPod I noticee the asthma was worse especially when I was listening to particular songs.

I realised that Asthma is not usually music related, and as I had a movement at the back of my throat, nose and in my temple again, I realised that another electrode possibly needed switching off. Isn't it great that one learns things through experience??? So back off to the implant centre where I had a great session. And yes - one more electrode was switched off. The asthma disappeared completely, straight away, and the worms and maggots died once again. However, that's not leaving me with a hell of a lot of electrodes to choose from, because the first six weren't able to be inserted due to scar tissue

Ellen then changed me over to a new speech strategy - I'm now on CIS which has a faster stimulation rate, and works slightly differently - turns on all the electrodes at once, instead of finding the one thats best for the sound. My poor old brain then has to get used to figuring all the sounds out. However, this strategy only uses 12 electrodes, and is used mostly for partial insertions (which is me anyway).

So far so good - I've heard much better, not asking people to repeat so much. The twang and nasally sound, although not completely gone, has lessened with this speech strategy.

I do remember about 5 years ago, I was in hospital once, and bored, so I started listening to my radio via a personal audio cable. When I started, I could hardly get any words at all. By the end of my hospital stay, I missed virtually nothing. That particular radio was long dead as it had been dropped too many times. (I won't tell you how long I was in there!!)

Yesterday I went out and bought a new radio, and plugged myself in. I want to be able to learn to listen again, and maybe, just maybe, if I practise listening to talking on the radio, I just may improve my hearing once again and get somewhere close to what i once had, maybe never as good as I once was, as I don't have the same number of electrodes, but it would be good if I could be better than now. And nothing comes without practise right? Not even sex!!!

I started listening last night for the first time. I was really really surprised at how much I could hear. In fact, I didn't miss much at all (so how come I can't hear on the phone??) But I did notice that there were some more worms at the back of my throat while listening! I haven't felt them today with normal sounds around the house, so I'll test it again later this afternoon. I truly hope I don't lose any more electrodes.

The autopsy results on my old implant is back. A small tear in the silicon was found, so it was definitely faulty. How the tear got there I have no idea, but I guess like everything, things wear out over time, like me! It was 16 years old and the newer implants have been improved. Lets hope I get 32 years out of this one, which will see me to the age of 77, and then I won't need to hear anyway as I probably won't make much sense then!!

It was nice to know that there was something definitely wrong with the implant though, and that it wasn't all in my imagination.

Off to listen to some political drivel on the radio now. If I can understand that, then I know I'm doing well!


Bron said...

I find it amazing how these marketing people think that if they call you back you will suddenly be able to hear. It's as if they believe that you are similar to a bad modem or line connection and can be rebooted by hanging up and calling back.

kim said...

WOW! I had no idea you were struggling so much. When we were together in Philly, I knew you had trouble understanding me a little but I figured it was due to my accent. I had some trouble understanding you too. Robyn you're so smart and have such a positive attitude, I just know you'll get your CI working up to its potential in no time. I wouldn't worry about what happens even ten years from now. They keep coming out with new stuff all the time. Big HUGS! I miss you.

Dave said...

I am working on getting sound, any sound out of my 2nd implant. My CI from May of this year is great, but the second one, implanted in August, is not working at all.
Still trying.
Great to get an update from you!


Anonymous said...

ADA is the Americans WITH Disabilities Act, not American Disabilities Act.