Reminiscing over the past seven and half months, I realized how wet I was behind the ears as I was learning how to hear with a cochlear implant. Now still in reminiscent mode, I find it hysterical but I did not then. When this super uber technology was turned on into my dormant yet primitive ear, I realized that six trillion months of researching wouldn’t have helped in preparing me for activation.
Sure, I read all the technical details of a cochlear implant!Sure, I read the software manual that maps my implant!
Sure, I talked to hundreds of people that went through the same thing!
Input Dynamic Range (IDR) defines the amount of acoustic input that is mapped into the patient’s electrical dynamic range. IDR determines the intensity range (width) captured by the processor for input signals. The HiResolution Bionic Ear System has the capability to capture a very wide IDR of up to 80 dB. The default setting is 60 dB.
In laymen terms, it means that if you have a low IDR the window of sound around you is smaller and it compresses loud sounds more. If you have a higher IDR, the window of sound is a little big bigger and it won’t compress loud sounds as much as a lower IDR will. Anyway, all I saw was the word wide and the fact that it didn’t have anything to do with the width of my rear end, I wanted it. My audiologist warned me again but obliged to my incredibly inexperienced suggestion. As long as I knew that I had all the auditory input available downloaded into my processor, I was happy as a clam. The super hearing wave started to lose its gusto this mapping. Noises that were once so prominent started to fade into the background similar to how a hearing person tunes out sounds. This time, it wasn’t that booming loud sound that I loved so much before. As time went on, it was almost as though the collaboration of sounds started to equalize in my head. My brain was catching up with the new way of hearing. It reorganized the neural pathways to make sense that a click of the keyboard had an extra frequency, women have an extra resonance of high frequencies to their voice and that leaves tinker as they rustle in the wind. This was about the time I was coming down off the auditory high and start teaching my brain how to recognize speech and sounds.
My overly hasty goal of hearing everything that the world was capable of culminating led me to experience foreign sounds and sensations. I am a long-term hearing aid user and I have become accustomed having 80dB of sound being pumped into my ear for twenty some odd years. It is safe to say that I associate my hearing with amplification and nothing else. My wise wisdom for today: throw out that theory out the window when it comes to hearing with a CI – raising the volume on a cochlear implant is not the same thing as hearing aid. It is like comparing apples to oranges, Nordstrom’s to Wal-Mart and a BMW to a Ford Taurus. Some people that are conservative with how loud the volume is but not me, I was a greedy little audiophile and I paid for it.
Well, the auditory high turned into an auditory nightmare and I have no one to blame but I. I developed a multitude of minor issues such as eye twitching, sensitivity to high frequency sounds, white noise, static, and distortion. I’m usually the last to admit my shortcomings but I should have listened to my audiologist right from the start. I walked into my last mapping with my tail between my legs and I let her do whatever she wanted. I was desperate for some clarity. She changed the IDR from 80 back down to 60, which erased the white noise and allowed clarity to come through. The lesson I learned, more is not always better. In comparison between the two IDR’s, I am not missing anything but I am gaining clarity and comprehension. The eye twitching was eliminated by changing speech strategies from HiRes-P to HiRe-S and widen the pulse width significantly. Twitch free for me! Men’s voices were resolved with some gains in the lower spectrum. Finally yet most importantly, she lowered the volume. :)
So after all that I have experienced, I would think it is safe to say I have learned my lesson. After months of auditory rehab, some fine-tuning and finally giving in and letting my audiologist take control – I am very happy with the outcome. This map has been the best map so far. My hearing has gotten better then last month and last month, it was better then the previous month. Just think, if I listened to her in the first place I would not be sitting here sharing this with you. :)
My advice to all you newly activated implantee’s – Throw away what you think you know and listen to what you haven’t heard.
17 comments:
Hey Abbie,
Great blog u have just posted. I found that pretty interesting.
You did make me learn something from it. I guess i'll take your advise when I am switched on and LET the audiogist take control.
Bet it must be pretty hard not hearing anything at all for just over 6months eh.
How did you found the outside world - were you social life affected?
Another question, can you sign?
katie x
(15 days to go) woop!
Thanks for GREAT post!!! It's very good of you to expose yourself in this humble and honest way... I think I learned a very important thing from you now, and you might have saved me some future discomfort and wrong decisions :-)
I'm also a greedy little audiophile ;-)
I remember that eye twitching part at my first mapping....I wondered if you had that too when I started to read your post, there you said it at near end of this post. I forgot to ask others if they experienced it too.
When I told my audiologist I had this, she said oh I gotta stop and turn it down a little. So my first month between the mappings I only can hear the noises that only I make, not from anyone else. Like you said with papers, I read newspaper daily with that sound...I got used to it after few weeks.
Good post/advice for candidates.
Abbie...funny, isn't it, that everything we knew to be true before got set on its ear? I always thought that 'more was better' too...and it's just not always so. Some days things sound quiet overall, but my comprehension is great and I hear the tiniest little sounds...amazing!
Abbie,
That is the best advice for anyone. Jen and I have the same audie and she really explains everything in detail. I had to bite my tongue and let her do her do the work.
I get very exhausted, sick to my stomach and dizzy with each mapping. That can also be an indication of too much high frequency.
It is so important for all CI users that mapping can be changed and developed. What works for me might not work for you, but if you don't ask you never know. This blog and others have great knowlege for all. One work of advice, before each mapping I have three people listen to me. Then I ask them how am I pronouncing letters - th,sh, vowels. Then I tell my audie if I am leaving off sounds. Also ask about your pitch and tone of your voice. All of this helps in mapping.
Remember louder is not always better. Only a month for new mapping - yeah!!!!
Katie,
I can't tell you how hard it is to let someone fiddle with your ears and not have any control. My audiologist is wonderful, she taught me a lot in addition to what I already knew. She took the time to explain everything but you think that sunk in my thick skull? Nuh uh. *shakes head*
The outside world was viewed through a completely different set of eyes after I lost my hearing. I didn't even want to go to the store in fear that someone was going to start talking to me. I went through a depression because of the tinnitus. If it was just dead silence, I think I would have been better off but it was the tinnitus that really got to me. It damn near drove me batty.
As far as my social life, it kind of flourished. I was always hesitant on doing things but I have friends that are like, "don't take no for an answer" type. I was catcher of a softball team even when I couldn't hear a thing. I kept myself busy for the most part.
I fingerspell mighty well. I am enrolling in ASL classes starting this summer. I want to learn now. Do you sign BSL?
Throw away what you think you know and listen to what you haven’t heard.
Best quote ever I heard, no pun intended! :)
This is very interesting to read in the small possibility I could go through with it too.
As you try to make me understand I cannot compare my HA to the CI when I ask questions such as "well with my HA I heard..." Nuh uh, throw it out the window, you just can't compare like that.
Great blog and teaches us to have patience and relax!
Alex
I found this blog interesting as 15 years ago when I went from hearing aid to CI, i did exactly this - overdid it on the volume. Apparently it's a common thing that most implantees do - crank up the volume as they are so happy to hear again.
For my reimplantion, I was a bit more cautious when it came to volume, so much so that thigns were a bit two quiet for the first few days.
However, I've just been remapped and things are looking very very good - but you'll have to wait for my blog to see!! LOL
Cheers
Robyn
Thanks so much for posting this. You've been so positive all along. It's hard to admit when you've been wrong, but you have helped so MANY people today by doing it!
Smiles,
Kim
Hey Abbie,
Thanks for your reply.
Yeah I do use BSL grew up using it at school and because I had other deaf people in my family who are deaf too.
Even though I was brought up in a mainstream school with a deaf unit. I had to learn to talk so I ended up using both. Since i moved to College i've lost a bit of confidence and refused to use my voice and only use it to the people that i know well. My voice is good which people had said that but it is "very quite" and alot of people struggle to hear what I said. So hopefully i'll be able to speak a lil louder by hearing my self with the C.I so that is another reason why I wanted a C.I.
It would be good for you to learn ASL. I'm currently learning ASL right now, well that's because of my football - I do travel alot and meet loads of deaf round the world through football. So I've learnt alot and also i'm quite good at using international sign language too.
Didn't realise your into softball. Over here in UK that sports isn't quite popular but i've played it. It quite good. How long have you played softball for? is that the only sports you like? sorry i'm just a lil nosey here. I like to get to know people :-D
It must be hard for you with the tinnitus. I've tinnitus myself before and after the operation - but not as bad as you. I manage to cope with it. It usually come and go. Has the tinnitus gone now you have the implant?
katie x
Wow... amazing blog.
You write like Michael Coherst, explaining how mapping works.
A marvel.
Abbie, thank you SO MUCH for this post! It was so interesting and I could really relate to the things you mentioned, being a long-time hearing aid user myself.
I also really enjoyed your article -- it was wonderful!
I'll definitely remember what you said, if I get approved for a CI. :-)
~ Wendi
Abbie,
What a great post. . . you said it perfectly for all of us who are "power junkies!"
I did turn down my volume AND my sensitivity after going bilateral. And it does make a difference. I've tried to turn the volume up but it doesn't sound right.
You are an excellent writer. . . keep it up!
Great advise Abbie. Thanks for this. I am a great believer in letting the experts take control. I would never pretend to tell my car guy what to do to make my car run better.
Thanks fo rthis!
HI Lane!
Golly its been such a long time! It is hard to get a hold of you since you are such a nightowl! I didn't have the eye twitching at my first mapping but I got it after my 3rd one. It has been resolved since (thank goodness) but I am happy with it.
I have to agree with Karen Mayes...you do write like Mike Chorost only you're more in layman's terms as opposed to his more technical. And I am in your shoes in that more is not necessarily better. You and I seem to have similar patterns in that we have twitching with Hi-Res P that went away with Hi-Res S. It is only one side though. Is yours one or both?
Way to go...I know how you feel, I kept asking my audiologist to increase the DR (IDR for you), and she says no. She explained why, then I just sulked in my seat hoping that two months from now, it will be even higher. I now have DR on everything 32, and music which I use for my car, of a DR 42. So, yeah, I'm on heck of a happy camper.
I'm just anal about how music sounds to me. Everything else is just peaches and cream (is that how you say it?!).
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