New User- Adjustment questions

[bennylips13]

Hello, my name is Ben Lippert from Watertown, WI. I had my surgery on June 10th and my unilateral CI device turned on July 10th. I was moderate to profound in both ears before the operation It has gone ok, but I am having some difficulties. I hear some noises better for example the crack of a baseball bat (I'm a baseball coach) or the rustling of a chip bag, but as far as people and conversations I am not much better and in some cases worse then I was before the implant and I can't figure out why. I can hear my voice and the noises I make (yawining, etc.) much better but other people have been a struggle. The music I play on my computer has to be at a louder volume then before I had the operation and I hear it better on my hearing aid side and not my implant side. The device almost sounds like it has an echo to it. Is this something that can be improved during a mapping session (I have one next week)? I've played around with it quite a bit and had it on every phase 1-4, but still have not found a conversational sweet spot. I'm not panicking. My mom had an implant 7years ago with phenomenal results, but I am worried. I feel like I have realistic expectations. I'm not looking for perfect hearing I just want to be able to hear people better than before. Any advice or tips would be greatly appreciated!

[Leblisa]

What you want is exactly what I want and I hope we both get it! (I won't be activated until the 29th).

 

But, I have heard many, many people say that it really takes time and a lot of exposure (practice)  for the auditory nerve and brain to 'get' all the frequencies and to incorporate them into a good 'whole' sound.  So, just keep doing the rehab/homework and keep notes of your thoughts so you have it all at your fingertips to discuss with your audi at your next mapping session.

 

Please post again (often!) to let us know how you're doing, OK?

[Adam]

Ben, Welcome to Hearpeers! Lisa is right on the money. Your brain has an aweful lot to sort out and it is going to take a little time and some mapping sessions to dial things in. The best thing you can do at this point is keep as detailed a journal as possible. hwere you are at, what sounds ytou hear, what they sound like, what sounds worse.....the more information you can provide your audiologist the better success he/she will have in getting things where they need to be. Of course her is the tough part, your responsibility to be PATIENT, PRACTICE and be PERSISTENT. the more sounds you can expose yourself to, the quicker your brain can make sense of things. I think every one of us at one time or other had moments of frsutration. Just try to hang in there as it will get better. Please let us know how you are doing.

 

Adam

[Sandy]

Hi Ben and welcome. I've been activated for 3 months now and yes, Adam is so right, you must follow the 3 Ps and frustration is part of it. I go for my third mapping in two weeks with the hope that my audiologist will reduce some of the high pitched sounds. Your brain indeed must catch up but once it does, it's a WOW moment. I still have difficulty with the sound of plastic bags; they are soooo annoying! I also seem to get an echo too but not all the time. Just keep plugging away, it does get better! I heard crickets today! Another WOW moment for me! I'm sure your mapping session will be a big help.

[Ivana Marinac]

And now - I have to close the game and to refer that you should read each one of above statements 

(Actiually, remind how everyone refered to the previous poster )

 

P.S.: I do not have CI experiences but I would say that the same principle work for each device: HA, CI etc.

[weimar]

Ben, I went through the exact same issues that you are and let me tell you - it will all work out.  In the past, I've likened it to a switch being thrown - one day you just realize how well you're doing with the CI.  You just need to keep at it with the rehab and practice.  Hang in there, once your brain adjusts to it, you'll improve significantly.

[bennylips13]

Thanks for your tips and support! I will definitely keep them in mind. I think I just needed to realize that this whole process is much more complex then simply turning on an "On/off" switch. I will be sure to let you all know how I am doing. In fact, I am a freelance journalist for now and I'm actually working on an article for Milwaukee Magazine on my cochlear implant story and my experiences in the hearing impaired world, so I will be sure to share it with you all. Thanks again!

[Leblisa]

I just came home from the bookstore and was reading snippets from a book that I'm embarrassed I can't recall the exact title/author: something like, "Shouting Won't Help" by a woman who's name is something like Kathryn Boutin (???).

 

Anyway, she had a CI but was not happy with her eventual outcome and she admits she did NOT do the rehab/practice stuff.  She says the first 3 months are critical and she should have been much more dedicated but she let life get in the way.

 

So, I am taking this as fair warning to myself: do the work!

[Sandy]

And Lisa it will be worth every minute. The hardest for me is the rehab on the computer as before the CI 95% of my "hearing" was lip reading. Practice, practice, practice. I have set times aside during each day and my mornings are taken up with CI rehab and swimming. The word "no" to friends wanting to get together in the morning has become the norm!

[jpl2ci]

Ben, what you've read so far in these posts accurately reflects reality. people who say they could hear perfectly at activation are telling the truth, perhaps, if you are being tested in the booth, with no outside noises.  the real world does not act in that manner.  Katherine Bouton's book is her story of fighting to not acknowledge her disability. your audi can only react to your comments so having a detailed journal can be an extremely helpful tool.  Over time your brain will adapt to the new stimuli of electric pulses and learn to translate them into recognizable speech patterns.  Practice listening with friends and family where the conversation topic is pre-determined. that way, you know who is speaking and what the topic is.  I would not suggest talking about Wisconsin politics or butter vs. margarine or cheese vs Velveeta, or Miller vs PBR, any other topic may be safe. adjusting the electrode responses can easily be done so do not be afraid to experiment.

 

good luck and post away

[Camille]

Congrats & Welcome Ben!  I was implanted 3 years ago on my left side and still use an aid on my right side.  My mother was implanted 20 years ago by CA so I thought I knew a lot about CIs....until it happened to me ;-0  Anyway, like you I tried to keep my expectations low/realistic.  When I was first activated the first words out of my mouth were, "This had better get a whole lot better!"  A month later, I tested the same as with my hearing aids.  This greatly concerned me!  Another month passed and I was "hearing" better with my CI and began to feel hopeful.  Another month or two passed and my CI ear was very much my dominant ear.  15 to 16 months later I frequently walked out the door to later realize I'd left my hearing aid at home! By the way, 4 months after I was activated I went to visit my mother who lives in Alabama (I live in Southern California).  I was looking forward to showing off my MUCH NEWER, GREATER TECHNOLOGY CI than my mother's which was implanted 17 years prior.  Well, she could hear better than me!!  I was SO FRUSTRATED!!!  But, you have to remember her brain had been using a CI for 17 years; mine for 4 months.  I am very happy to report, now, 3 years later I do hear better than her ;-)

[bennylips13]

Thanks Camille and everyone else! I had my two week follow-up last Thursday and they turned it up some more and it is feeling louder and better, but still looking forward to turning it up more at my monthly follow-up. I asked to be tested on words and sentences right after my turn-up and I got a 12% on words and 42% on sentences. It was well below what I was before surgery but My Audi said that was good for two weeks. I am starting to feel much more confident with the process as a whole. I think I am going to start rehabbing this week! Did anyone else get tested after two weeks?

[Leblisa]

I just got home from my initial activation and was told I wouldn't be tested until the 2 week mark.

[Adam]

Lisa , cant wait to hear the details.

 

Ben, as everyone has said, it does get much much better. There were plenty of times i got very frustrated and was never satisfied with my scores. That can be a two edged sword. You always want to strive to do better and work towards that but you can't have unrealistic expectations either. Each persons brain is different and even if you have the same hearing loss as somebody else, there is a good chance that you both will progress at different rates. Just take  a step back and remember, YOU ARE HEARING. celebrate the small victories and try not to get caught up in the numbers. just enjoy the new sounds that will be coming your way.

[Sandy]

Adam you are so right. I don't get tested for words and sentences until the six month mark! I've been working on the rehab for Med-el and it can be frustrating. Will keep plugging away. Another rehab I am doing is playing Bingo Bash on my iPad. The numbers are verbal so I don't look at the bingo balls and just click what I think is the number. I've got about a 70% score so far. I'm excited about my next mapping tomorrow. Maybe when I fly home I will understand what is said by the stewardess and pilot and it won't sound like a robot! Lisa hope to hear soon how your activation went.

[Adam]

Sandy that is awesome.

 

You have just the right attitude which is probably most important. For a while it was people I didn’t know that sounded the most cartoonish. Friends and family sounded the most “normal” Pretty tinny and echoy (if that’s a word) but could for the most part recognize who they were. Anybody else, all bets were off. A few people just sounded like white noise type of static. Keep plugging away. The MED-EL website has a number of exercises for you plus there are a bunch on the web. Tigerspeech.com has some and there are a bunch of others.

Adam

[Sandy]

Thanks Adam. I tried Angel Sound but my mcafee virus protection cautioned against downloading so erred on the side of caution.

[Adam]

Sandy i don't remember angel sound. maybe that is one of the newer ones

 

Ben those scores are pretty darn good. Try to look at it this way. Lets say I walk up to you with a book on how to learn German and I tell you you have 2 weeks to speak it fluently. Your gonna tell me I'm crazy, right? If I come back to you after 2 weeks and you can understand 42% of what is spoken to you, you'd Be THRILLED! I know I would be.

That is what your brain is doing right now. it is basically learning a new language because nothing sounds like it did before.

Be patient and try to enjoy the small victories.

[bennylips13]

That is an excellent point Adam with the German that's makes me feel a lot better! Music is starting to get better and people are starting to feel close to my hearing aid level which is a remarkable improvement from the first days after activation. This group has been a great help!

[Adam]

Ben they start you out pretty low at first then each week raise it up a little more. Youll get there. You never know, in 6 months you might be thinking about going bilateral.

[bennylips13]

I hope so Adam. My mom is actually getting her 2nd one turned on in 10 days. When I got turned on she was actually in surgery!

[Adam]

Ben, the reason they start you out with lower volume is to give your brain a chance to adjust then moving up a little each time. As your brain adjusts the sound seems to get lower and lower.

 

A good way to look at it it like this. When you stand in a pitch black room for a little while then somebody flips the light on, at first it is almost too bright so you practically have to cover your eyes. After a few minutes you can stand in the room with the light and it is fine. maybe even a little low.

 

Your brain goes through the same thing with sound so they start you out pretty low as to not overwhelm you.

[Leblisa]

Adam, that's so true!  Just today I felt I had to switch to program 2 (which at this time is just a higher volume program, no other differences) on the FineTuner because I felt I needed more volume.  But it had felt perfect yesterday.  Sounds also are sounding less 'cartoon'y but still kind of echo-y.

[Adam]

I tried to keep it at the first program for a full week before going to program 2 and then did the same with 3 and 4. Depending on what i was doing, i might have switched back for a fw minutes like if i was unloading the dishes. that really seemed to grate on my nerves.

[Leblisa]

I know what you mean about dishes and silverware.  I perceive it as an almost-pain in my head and it takes me a moment to realize it's actually a sound being caused by something in my environment.  I then say to myself, "This is normal; this is the sound of silverware."  It keeps me very 'in the moment'.

 

My own voice sounds so different that I've asked a few people if I sound any different and they've all said no except my very musical son.  He said, on the first day, that I was speaking as though I were balancing a ball on my head.  I thought that perfectly captured the strange self-awareness I was feeling with every word coming out of my mouth.  I'm already getting used to the different-ness and I bet I'm sounding more 'normal' even to him (I'll have to ask him again).

 

Another thing I noticed today: I was driving, listening to talk radio with just the CI on.  I then additionally turned on the HA and immediately noticed an apparent decrease in volume in the CI.  Then I turned the HA off and it appeared the volume of the CI went up again.  Since there was no actual change in volume I take it to mean that my brain instantly will prefer to 'attend' to the familiar HA sound when given the choice.  This is why I will keep the HA off as much as I can, which so far has been pretty much all the time.