New to CI journey - looking for support/information

[Newbie]

Hi,

im new to this forum and new to CI world, also. I had my surgery on 21st February 2018 on my left ear and was switched on 8th March 2018. This is my 3rd day wearing my nucleus 7 cochlear implant processor and I seriously hate it.

I hear so many beeping like sounds (not really beeps, can’t identify what it sounds like tho). I can never  make sense of the sounds I’m hearing. I also can’t hear any words and am just really struggling with all of this. I thought surgery/recovery would be the hardest but now I see that was the easy part. I have to fight the urge to take my processor off during the day and look forward to night time when i can finally remove it :/

 

Is it just me struggling like this? Does it really get better? What should I do to make it easier? HELP! I feel a little depressed to be honest.

[Mary Beth]

Hi @Newbie

 

Hang in there!  The real work begins at activation.  Our brains need time to make sense of all of this auditory input.  How much time our brains need to start figuring things out varies from person to person but there are things we can do to help things along.  We have a topic here on aural rehab and it is full of helpful suggestions from members.  Check it out.  You will find terrific info there.

 

Today is actually the 3 year anniversary of my first CI activation day.  I started out hearing only static and beeps.  I did a lot of aural rehab everyday and things improved rather quickly.  It takes time and practice and patience.  

 

Hang in there.  It will get better.

[Newbie]

2 minutes ago, Mary Beth said:

Hi @Newbie

 

Hang in there!  The real work begins at activation.  Our brains need time to make sense of all of this auditory input.  How much time our brains need to start figuring things out varies from person to person but there are things we can do to help things along.  We have a topic here on aural rehab and it is full of helpful suggestions from members.  Check it out.  You will find terrific info there.

 

Today is actually the 3 year anniversary of my first CI activation day.  I started out hearing only static and beeps.  I did a lot of aural rehab everyday and things improved rather quickly.  It takes time and practice and patience.  

 

Hang in there.  It will get better.

Thank you so much! I’ll check out the topic on aural rehab. I need more patience. I just wasn’t expecting to hate my CI, after fighting to get it. I look forward to progress with time.

 

thanks again

[Mary Beth]

@Newbie

Maybe you can take short breaks throughout your day or lower the volume so that it is comfortable to wear all day?  Check with your audiologist.  Comfort is important.  If it is too overwhelming, ask your audiologist if you can have your MAP adjusted and increased at a slower, more gradual pace.  Good luck.

[Kara of Canada]

Hi and welcome to the group! Totally it involves tons of patience. Learning new sounds can be really tricky. Always try to find out what the sound is so you can train your brain to better understand. It takes a while. Day three is definitely just out of the gate. So hang in there! Best of luck and keep us posted. We’re here for each other as many in the real world don’t understand our journey. 

[Jdashiell]

Patience, practice and perseverance 

stay with it as is really does get a lot better with time. And working at it.

At first I heard pinball machine sounds, pings, boings and clicks for voices and music. After a few days I was able to make out words. I am lucky as I progressed rapidly.. everyone progresses differently 

Be patient and work at it. 

Work with the apps that are available for Auditory training. AB offers  ABClix which is great. Angel Sounds is another, there are many others to help.

Best of luck!

[Valentin]

Hi @NewbieWelcome.

Three days are very short time.  The day of the connection and several weeks before were terribles. The sounds are unrecognizable. You must have  many patience, although brands are different, this is a large process in all. Here in MED EL forum name it as a "Journey." Don't worry about first days, weeks or months. It is probably in six months you look back on these days and see the improvements you have had. 

In the forum, many people write a small diary of  our progress. in this way you can read later and know how you improve your audtion in the time.

 

[Newbie]

Thank you all 

 I feel a lot better having read all your posts. I’m practicing more and have made progress (yay!). I made more progress with environmental sounds: clicking sound while I text (havnt heard that in years) water dripping, fan when turned on etc. I’m very happy with that. Still have more environmental sounds to work on identifying, but not too bothered by this. I’m also now able to hear voices when spoken to, however, still not capable of understanding speech, unless I lip read, even then it’s difficult. But I’ve been told that is normal and expected at this time.

 

Im definitely happy to be apart of this forum and will be in and out as I progress with my CI journey. Thank you for the warm welcome and the hope that it will/does get better. 

 

Have a good day,

shama 

 

[Newbie]

UPDATE & QUESTIONS:

Hi everyone

so, it’s now almost 2 weeks since I was switched on (22/03/2018 will be 2 weeks).

I’ve made progress, I can now engage in conversations/communication if I combine lip reading and hearing. I’m also hearing and identifying a lot more environmental sounds. Heard an airplane flying while out for a walk today, which was an awesome moment. 

 My hearing aid is still better but that’s expected, at this point. I don’t wear CI while at work. I tried wearing it with my hearing aid to work once but removed  it 10 mins into the shift. I was getting a lot of sounds but was really struggling to make sense of communication with colleagues. Once I took off CI, communication was easier.

Were you able to wear CI to work straight away?

How did your first day at work with CI go? 

 

Thank you 

 

[Mary Beth]

My audiologist told me to wear the CI always and I was allowed to wear the other HA as much as needed as long as I spent time each day with the CI alone for several hours.  I had to wear the CI at all times to help my brain sort things out.

 

Speechreading was my friend in the early days at work.

[Sandy]

Hi and welcome.  Remember the 3 Ps - practice, patience and perseverance. This is a marathon not a sprint.  Make sure you ask what the sounds are that you hear.  I was told by my audiologist to keep up the lip reading as it was an extra tool that we have at our disposal. After five years I find that I no longer use it as much. I agree with Mary Beth to wear your processor at all times. It will make a big difference.  Good luck and keep us informed. 

[Valentin]

@Newbie Although you sent your last message around 10 days. I'm sure you will improve day to day. Remember write your diary. Today April 1, How do you feel? What new sounds/noises  was you discovered? 

[Dave in Pittsburgh]

Just hang in there all the sound you are natural.  just remember that ear has no use the the CI is takeintcits place ,now your brain has receive a foreign device it has to adjust to it,as you go thru a series of mapping you and your audiologist will make adjustments,keep a small note pad and pen with you at all time during this period and write down any noise that bothers you or can’t hear I has a problem with kitchen noises water hitting the stainless steel sink,silverware hitting each

i got my first CI. 10/16 and I just got my second Implant 3/17

[Newbie]

 

@Valentin Yes it has gotten so much better. I can communicate really well 1-1 with CI on its own now. I still struggle in noisy environment because I'm getting so much stimulation and my brain is struggling to recognise and make sense of all the sounds, but it will get better!  Diary is such a good idea as it can help me see where i was and how far ive come. Thanks!

 

@Dave that’s another awesome idea, and I definitely will start writing down what I like/dislike after every mapping, now. Thanks! Congratulations on second CI. How are you finding it so far? 

 

UPDATE: 

I did a beep test with CI to assess how well i hear. The audiologist played different types of beeping sounds (low/medium/high pitch) at different volume levels. I was told my results are equal to someone with normal hearing. Was very happy to hear that! SO excited for what the coming days/weeks/months bring!

 

i hope you have all been well

 

[Jewel]

@Newbieyour update is awesome! Exciting times ahead! Please keep us posted. 

[Valentin]

Great @Newbie I'm sure every day we improve a little. But you recognize this improvement when you read the diary after months. :-)

I have next mapping in some weeks. I am looking forward to get to know the new changes. 

[Mary Elgab]

Please, someone tell me: what is "mapping?"

[Mary Beth]

@Mary Elgab

 

MAPping or mapping (you will see both spellings) is a term for when we are connected to a computer and our CI audiologists set the programs for us.

[thomasroper4]

On 3/9/2018 at 9:40 PM, Newbie said:

Hi,

im new to this forum and new to CI world, also. I had my surgery on 21st February 2018 on my left ear and was switched on 8th March 2018. This is my 3rd day wearing my nucleus 7 cochlear implant processor and I seriously hate it.

I hear so many beeping like sounds (not really beeps, can’t identify what it sounds like tho). I can never  make sense of the sounds I’m hearing. I also can’t hear any words and am just really struggling with all of this. I thought surgery/recovery would be the hardest but now I see that was the easy part. I have to fight the urge to take my processor off during the day and look forward to night time when i can finally remove it :/

 

Is it just me struggling like this? Does it really get better? What should I do to make it easier? HELP! I feel a little depressed to be honest.

Your brain is learning to interpret the signals from the implants. Thats why they don't do two at th0e same time and wait before they start mapping. If you yeild to the urge to take them off then its just going to take longer.

[Dave in Pittsburgh]

This is why it’s called a journey. It takes a while for your brain to receive a foreign object remember your ear is no longer a functional part of your body so now the brain is receiving something different .Your audiologist should have covered this with you these sounds and more to come is part of the programming don’t take off your CI as you will delay the process .i has my first implant in 2016 and I just had the second one one March so I am going thru this all over againSid your audiologist give a audio rehab to do listening to words this is very helpful and important to stimulate your brain

.

 

 

 

 

[Newbie]

On 4/11/2018 at 11:48 PM, Valentin said:

Great @Newbie I'm sure every day we improve a little. But you recognize this improvement when you read the diary after months. :-)

I have next mapping in some weeks. I am looking forward to get to know the new changes. 

Yeah definitely! My hearing is so much better now. I did a test using HA and CI together, followed by HA on its own and CI on its own. I was blown away to find that I performed best with CI on its own!! My HA was so bad, in comparison, which was the moment I realised how much i was really missing out on as an HA user.  

Have you had your mapping? If yes, how is your hearing now? 

On 4/27/2018 at 10:54 PM, thomasroper4 said:

Your brain is learning to interpret the signals from the implants. Thats why they don't do two at th0e same time and wait before they start mapping. If you yeild to the urge to take them off then its just going to take longer.

Thats true. Thank you. I resisted impulse to remove it/ wear HA with it and now i love my CI!!! I dont even wear HA anymore. Which is amazing as only last month, HA was literally my life!

On 4/27/2018 at 11:06 PM, Dave in Pittsburgh said:

This is why it’s called a journey. It takes a while for your brain to receive a foreign object remember your ear is no longer a functional part of your body so now the brain is receiving something different .Your audiologist should have covered this with you these sounds and more to come is part of the programming don’t take off your CI as you will delay the process .i has my first implant in 2016 and I just had the second one one March so I am going thru this all over againSid your audiologist give a audio rehab to do listening to words this is very helpful and important to stimulate your brain

.

 

 

 

 

Yeah, you are absolutely right. Thank you 

How is it going with your second implant. May i ask, how did you get a second implant? Was it privately funded? In my country, adults only get 1 implant covered by government funding. So if i wanted a second one, ill have to do it out of my own pockets, and its SOOO expensive ar 50k!