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Just introducing myself


Lenny

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Hi Everyone,

 

My name is Lenny and I just wanted to introduce myself and possibly ask some questions as I go through my CI journey.

 

About 14 months ago I woke up with SSD in my right ear, the cause of which has never been explained. After quite a few months of hoping my hearing would come back, it bacame clear that wasn't going to happen. A couple more months was spent trialing hearing aids and an external BAHA before I finally decided on getting a CI.

 

I still have one good ear, which I now feel very lucky to have, so my main reason for getting a CI was to recover some sense of bilateral hearing and help with tinitus management in my right ear which was driving me crazy.

 

As a result I was implanted 6 weeks ago and have been switched on for 4 weeks now. 

 

I've been told that understanding sounds from the CI will take some time (especially as I still have a good ear), so I have kept my expectations low. Sure enough, I am finding it almost impossible to understand speech, but I have found that even the sensation of sound in my right ear is better than nothing at all. After reading a number CI stories it does seem like it takes time and 4 weeks is not much, so I am determined to persevere with it. 

 

In the meantime I am coming to terms with having to manage a CI and look forward to talking to others.

 

Lenny.

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Lenny,

Welcome to hearpeers. I am very excited for you in taking a huge step in your hearing journey. I think I can speak for everyone here in saying that I totally understand the frustration you can feel at times. You have to remember that your brain is having to relearn how to hear in one ear. If I were to give you a book of a particular language and then told you you had to speak that language fluently in just a few months, you would say I am crazy.

It takes a great deal of patience, practice and PERSEVERENCE. Keep on plugging away. You will get there. When I was activated with my second implant. They asked me to not wear the other processor in order to force my brain to use that ear. Since you have hearing in that ear, it might take a little longer to get up to speed. Each person is different.

Let us know what types of practice you are doing already and we can suggest a few other options.

Looking forward to getting to know you.

Adam

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Hi Lenny, welcome to Hearpeers. As Adam said, it takes the 3Ps (patience, practice and perseverance) to get where you want to be with your hearing. I developed tinnitus after my implant and find that it gets worse if I'm stressed or drink too much caffeine. My journey has taken me two years and yes it can get frustrating, but the results have been fantastic. I can hear and recognize sounds I never heard before, carry on a conversation without a "pardon me", hear the birds sing and the sound of the wind in the trees. Good luck in your journey and please keep us informed of your progress. Any questions, please ask. We are here to support each other.

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Hi Lenny,

 

Welcome to hearpeers! Random question.. Were you at the SCIC single sided deafness day not so long ago arranged by Emma. If so, my name is James and I was sitting in the same room as you - I had the severe brain injury playing soccer and was awaiting my surgery at the time! I am now 8 weeks post activation! 

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Thanks for the welcome everyone! I'm going to make the 3Ps my motto for the forseeable future.

 

Adam . . . I've had some trouble with the direct input cable, so have not had much chance to run any proper practice or rehab sessions. Instead, I've just been wearing it all day and only taking it off when I go to bed. I have the iAngel app on my phone all ready to go and a couple of audio books I want to try, once I get my direct input cable working. 

 

James . . . Yes that was me! How are you and how have you got along with the implant? Emma has moved on, so my audiologist is Carol Amos. Looks like I'm only a couple of weeks behind you, so would be great to hear how you are doing. I'm finding that I enjoy having the sensation of sound again from my deaf side, but cannot really distinguish anything meaningful. I'm pretty sure my good ear is still doing most of the interpretation.

 

Just a general question to anyone reading. I've found that I get more definition of sound when I turn up the volume on my implant, but I also get tingling sensations and small electric shocks. Does anyone else find this happening and does it go away, or will I have to live with it? I don't want to lower the volume because then I get little to no sound definition.

 

Lenny

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Hi Lenny, I am doing really weIll thank you. Yes it was a shame to see Emma go, she done so much for me before I had my surgery done, but I am in the safe hands of Leanne now and results so far have been very positive.

 

My first two weeks post activation were really difficult, but I think a lot of that was down to my mental state - although I had done a lot of research and I knew receiving a CI would be a journey, I think deep down I was hoping it would be up and running instantly. After some wise words from the nice people on this forum, I dusted myself off and was ready to start getting on with things. At first all I could hear were simple noises, like footsteps and the typing on my keypad, I certainly couldn't make out speech or listen to music.

 

After the first two weeks, I definitely enjoyed having something coming in that ear again - even though none of it was useful - and like yourself, I didn't have my audio cable yet, which was highly frustrating as I wanted to get stuck into the rehab work. Once I did receive the cable in week 3, I was able to start training my "new ear" and I found I could actually understand some words. On my 4th week mapping appointment they put white noise in my good ear and tested me on various sentences. I completely surprised them and myself with what I could hear, which gave me lots of confidence and spurred me on to be more dedicated with my training - I am currently listening to an audiobook and I can hear every word, its still a very distorted voice but the fact I can hear what's being said has given me a lot of confidence.

 

I didn't find the angel sound app brilliant but I can highly recommend the full version on windows. I've been trying to spend some time on it each day as well as 30 min or so on the audiobook. Although I can make out speech when training, I know I still have a long, long, way to go. I am certainly not at the stage where it doesn't matter what side of people I sit, or walk down the road on, however, I am trying to keep them on my bad side so I can train that ear rather than hiding behind my good ear, which is naturally going to happen.

 

I'm still slightly below the ideal range of the implant which is slightly increased each time we go back to these initial appointments, but I think on my next appointment I will more or less be where it needs to be. If you ask the audiologist to switch your CI back to your first appointment settings for a minute you will probably be quite surprised with how different it sounds.

 

I had 1 or 2 evenings where I thought I was getting small tingles in my head but that was in my first week and it certainly wasn't a common occurance so I can't comment much on that.

 

We both have a long and exciting journey ahead and our timeframes will be different - as is with everyone - but the sooner you can get the audio cable going the better. Out of interest is your CI manufactured by Med-el or Cochlear and how has the CI affected your tinnitus?

 

Cheers

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Just a general question to anyone reading. I've found that I get more definition of sound when I turn up the volume on my implant, but I also get tingling sensations and small electric shocks. Does anyone else find this happening and does it go away, or will I have to live with it? I don't want to lower the volume because then I get little to no sound definition.

 

Lenny

 

Hi Lenny,

another Sydneysider here. 

I've been implanted 4.5 years and love it. I go to SCIC also but don't have a regular audi. 

I'm no expert but I wouldn't recommend you turning the volume up too much. Just give yourself some time and allow your brain to adjust to all the new stimulation. Don't focus on getting things perfect at this early stage. 

I struggled for at least 6-8 weeks and literally woke up one morning with much clearer hearing.

Matt

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Hi Lenny

I agree totally with Matt on the volume. I wouldn't start turning up the volume until your brain is used to the volume it is at. Just be patient.

As far as the "electric shocks" if that is what you are feeling, you need to contact your CI team (surgeon, Audi and Medel rep) as soon as you can. That is not normal and needs to be addressed.

Adam

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Hi Lenny,

It took me awhile to discover the settings button on the lower right in the iPad app for Angel Sounds. That lets you choose initial, medial or final sounds; the difficulty level (3 choices or random); the number of word choices (up to 6); the listening environment (quiet, noisy, phone). Just in case you have not stumbled on those settings yet.

What I like about the app is that you can view a graph of your progress (upper right button) and track it over time.

Sounds like you are off to a great start. Enjoy the ride.

Mary Beth

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Following up from Mary's post, I didn't know there were settings buttons on the app, so thats why I probably didn't get on with it - I will download again to try it out!

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Hi James,

Have you also downloaded the CLIX app? It's helpful at the word level. Goes from easy (level 1) to more difficult (level 9). Gives you the choice of single word, targeted word at the end of a phrase, targeted word in the middle of a phrase and two targeted words for each level. Also has a test to determine which level you need to work on.

Mary Beth

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Hi Mary,

 

No I have never heard of CLIX but thanks for the recommendation, i'll download it today and check it out.

 

I had a play with the Angelsound app this morning and it is a lot better now you've highlighted the settings menu for me!

 

How are you progressing on Angelsound? 

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Hi James.

I was implanted in February and activated on March 9th. At first Angel Sounds was too difficult for me. CLIX was where I had much more success at first. Then I returned to Angel Sounds and was able to work on it. It's quite amazing how things progress. I added another app that has speech in noise to my routine about a month ago. I am always looking for new ways to train. Audiobooks, podcasts, etc. I am loving this journey. How are things going for you?

Mary Beth

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Everything's going well thanks. Almost two months in and trying to enjoy the ride now rather than get frustrated as I was at first.

 

I'm very good with speech on Angel Sound in the quiet setting but I struggle a lot in the noisy settings such as cafe on the app but hopefully that will come with some hard work. 

 

Have you tried the full version of Angel Sound on a desktop computer? I'm trying to do an hour a day of practice split between an audiobook and angel sound. I have tried podcasts and the radio but thats not quite clear enough yet for me to understand.

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James,

Are you using a Rondo, OPUS 2 or Sonnet? Early on the best sound for me following podcasts was with the red DAI cable. Then I progressed to the Quattro4.

Mary Beth

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I am actually with Cochlear who do have their own versions of bluetooth transmitters etc but I am just using a single direct audio cable plugged into my iPhone or mac.

 

I'm currently using this audiobook on youtube which is one of my favourite books and finding it quite enjoyable - I'd be interested to hear your thoughts.

 

https://www.youtube.com/watch?v=_6oSUt39gU0

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Hi James. I had the Med-el system implanted and was lucky enough to take advantage of the 2 ways 2 hear promotion. I haven't used the Rondo at all yet, because the magnets were for the previous implant and it kept falling off my head, but I've now got it sorted  :) and will start to switch between the two.

 

It was great reading about your journey so far, and there are positive similarities. Typing on the keyboard and crinkling of potato chip packets were the first sounds I could clearly distiguish. I did the white noise test at SCIC yesterday and I was able to understand some words and that is definitely encouraging although I am having a lot of trouble with the lower frequency mmm sounds. I also have my cable fixed up now, so should be able to get into the real practice now.

 

Matt & Adam . . . Thanks for your advice. Maybe I am trying to do it all too quickly. I am getting almost a feedback sound on the sharp noises (e.g. cutlery/knives on plates) when I have it up loud and it is causing my ear to ring! But when I turn it down I find I can't hear much else. Anyway, I'll keep the volume lower and see how I go about picking up the other sounds.

 

Mary Beth . . . I had not heard of CLIX either, but have downloaded now and will give it a try tonight. Thanks. 

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Lenny, I feel your pain. The higher pitches for a while we're brutal. Taking the silverware out of the dishwasher with the plates was almost painful. We ended up turning electrode 12 way down to give my brain a chance to catch up. I did not use my dia cable for quite a while as my Audi wanted my brain to do the work without help.

Keep plugging away, it will get better.

Adam

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Adam and Matt got the point - Lenny you should work with your audiologist: either to see if you are putting volume too high or to readjust some electrodes which can cause even twitching some facial muscles because the overstimulatio of the facial nerve.

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Ivana, I wasn't getting any twitiching of mucles in the face, just the tingling and what I took to be very quick shocks. I've been keeping the volume down over the last week, and have found it much more comfortable. I'm worried I'm missing things with the sound down, but when I connect the DAI cable I don't have much trouble hearing my iPad while on the same setting (understanding what is said is a completely different matter though).

 

My next audi appointment is 2 weeks away, so will see how I go in the meantime.

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Lenny, keep detailed notes of what wounds give you trouble. Try to be as specific as you can. What the sound sounds like, the envroment you are in like outside or in auditorium with high ceilings a lot of metal in room, lots of people.........

This will help your Audi get to the root of the problem. You might only have to turn one electrode off or way down for a while then a little later turn it on then up slowly so you can get used to it. I had an issue with electrode #12. This one dealt with the high frequency. Just taking the silver wear out of the dishwasher or putting plates away was almost painful. I couldn't deal with it. We did what I explained above. All electrodes are on and sounding like they should. This was my experience but it is worth talking to your Audie about. She knows your mapping and hearing history way better than I do.

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Hi Lenny,

When time will come - you'll understand. Your brain should relearn old stuff and adapt itself to the new inputs. Relax yourself and as Adam advised you: wrote what bothers you. By the time, your brain will be ready to accept more and more - this is the key about neuroplasticity. It's like a muscle - by strengthening it can do more than you can imagine. Just be patient with your brain. ;)

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Hi Lenny, I too sympathize with you. High volume and high pitch are brutal to start with. My audiologist started me very slowly and upped both volume and pitch once every 3 months over the last two years. I'm almost there. One more session. She gave me two settings: she upped everything then setting two was louder. I would use the first setting for three months then the second one. I found within a week I would get used to it. My practices included listening to TV and YouTube. I also had a wonderful friend who came over 3-4 times a week and we did practice sessions. She had a deck of cards and would randomly read numbers for me to repeat. I challenge my self to hear everyday. Riding in the car and carrying on a conversation, going to places I avoided when I couldn't hear. You will be amazed at the progress you make. As ivana says, work with your audiologist. She/he is your best resource.

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