Deciding on CI for my 6 yo son (deaf in left ear)

[Alexei]

Hi everyone!   I'm new to this forum and here's our backstory.  We discovered that my son is profoundly deaf in his left ear at his kindergarten screen.   He passed his newborn screen with no issues.   We were shocked as he has apparently adapted very well and you would never know.   Hears perfectly out of his right ear, does well in school so far (he's now in first grade) and is very athletic.   The cause of his hearing loss is unknown but we're guessing it was early in life as he has adapted so well and doesn't seem to know any different (to the point where he doesn't even fully accept that he has hearing loss).   He has been seen at several clinics and is considered a good candidate for CI at least anatomically (nerve is present and fully formed).   Since he has adjusted so well it does make the decision on doing a CI challenging, but we're leaning towards doing it to give him the benefit or full binaural hearing and also to keep the nerve on that side stimulated as who knows what future therapies might be available and accessible to him.   I'm interested in anyone who has gone through a similar decision process and how you decided on the Medel cochlear implant for your child.   Thank you!

[Mary Beth]

Hi @Alexei and welcome to HearPeers.

 

I am a Teacher of the Deaf and also a bilateral Med-El CI user.  I have had my implants for 3 years and they are amazing.

Its been relatively recently that children in the US with single sided deafness have been candidates for CIs.  We are just starting to see this in schools.

I spent 24 years with absolutely no hearing in my right ear and a hearing aid in my left ear before getting CIs.  It is so much easier to hear with 2 ears!  Much much easier and much much better sound access.

I had the pleasure of spending a few days last week with @VeroNika who has single sided deafness and has a CI.  She is an amazing person with a beautiful piano gift.  Hopefully she will jump in soon.

 

Wishing your son the very best.

[Alexei]

Thanks so much for your comment Mary Beth! 

[Mary Beth]

Tagging @Colleen Powell also.  Colleen is the mother of a son with bilateral CIs.  I had the pleasure of spending a few days last week with Colleen too.  She is a great resource for parents.

[Mary Beth]

@Gemma

Has shared her single sided deaf with CI experience with us here before too.

Hope you are well @Gemma!

[Mary Beth]

Here is a link to @Gemma‘s guest article

 

https://blog.medel.com/a-hearing-therapist-chose-med-el-for-single-sided-deafness-ssd/

[Gemma]

Hi

Thanks for the prompt MaryBeth! Sorry I haven’t been on Hearpeers for ages...doing too many other things.

Alexei, it is good that your son is coping well at present. As a child (about 4 yrs old) I hadn’t realised, and neither had my parents, that I couldn’t hear in my right ear until my dad held something to my that ear to listen to. Apparently i looked at him as if he was mad  and pointed to my left saying “this is where I hear!”

Things are harder depending on the environment you are in, and I think as life got more stressful as I got older stared to notice more difficulty too.

I struggled on untili had kids myself and then felt I needed to do something for their sake. I had twins and it was hard not being able to hear the one on my right side, or only realising they were talking to me when they flopped against me in exasperation because I was ignoring them.

I had a bone anchored aid at first which gave me an awareness of sound. I was later very fortunate to get a CI for my right ear, and find out what it is like to hear around me(it’s not the same as my good ear but it really helps me, and I wouldn’t be without it).

If I could go back in time to when I was a child, with the knowledge I have now,  and the technology,  I would give myself a CI. There is a reason for having two ears.....and life is easier with 2 functioning ear.

 

[VeroNika]

Hello @Alexei - and thanks @Mary Beth for tagging me! 

So I have SSD - born with regular hearing, turned deaf on my left ear around the age of 3,5 years. Back then it was believed that my hearing nerve is damaged, so I was not fitted with hearing aids/implant.However much later (aged 21) I found out that the hearing nerve is ok and I would be a candidate for a cochlear implant, which I then got.

So I know both sides - SSD with/without a cochlear implant. I can only share my personal experience - before the implant I used many coping strategies (also some that helped me in school, let me know if you want to know more about that) that helped me in dealing with difficult hearing situations in my daily life, some I still use. Comparing before the CI to now with the CI: I feel that I personally benefit a lot from the ci (for me amongst others: binaural hearing, hearing in difficult hearing situations, enjoying and playing music even more with the ci,...).I feel that I learnt a lot from my SSD but now am very happy with my cochlea implant! @Alexei - please let me know if you want to know more! ? Cheers from Austria, veronika

[Alexei]

@VeroNika That is a unique perspective and very helpful!   How do you perform on a hearing test now in that ear since so much time went by where the nerve wasn't being stimulated?

[Alexei]

34 minutes ago, Gemma said:

Hi

Thanks for the prompt MaryBeth! Sorry I haven’t been on Hearpeers for ages...doing too many other things.

Alexei, it is good that your son is coping well at present. As a child (about 4 yrs old) I hadn’t realised, and neither had my parents, that I couldn’t hear in my right ear until my dad held something to my that ear to listen to. Apparently i looked at him as if he was mad  and pointed to my left saying “this is where I hear!”

Things are harder depending on the environment you are in, and I think as life got more stressful as I got older stared to notice more difficulty too.

I struggled on untili had kids myself and then felt I needed to do something for their sake. I had twins and it was hard not being able to hear the one on my right side, or only realising they were talking to me when they flopped against me in exasperation because I was ignoring them.

I had a bone anchored aid at first which gave me an awareness of sound. I was later very fortunate to get a CI for my right ear, and find out what it is like to hear around me(it’s not the same as my good ear but it really helps me, and I wouldn’t be without it).

If I could go back in time to when I was a child, with the knowledge I have now,  and the technology,  I would give myself a CI. There is a reason for having two ears.....and life is easier with 2 functioning ear.

 

Hi Gemma!  I think I may have seen your name on some of the FB threads (if I'm recalling correctly).  You may have the record for duration of deafness followed by successful implantation!  At least the longest that I have come across.   Thanks so much for your feedback and I read the blog that @Mary Beth referenced as well which was very helpful.

[Mary Beth]

It’s so great to see you here again @Gemma!  And to have @VeroNika here now too!

[Colleen Powell]

Hey there!  My son Liam is bilaterally implanted.  He received his first implant at age 3 and his second last year at age 7.  He's doing awesome!  I can't necessarily speak to the benefits of a CI with Single Sided deafness, but I can tell you we've been so happy with Med-el.  The things we are most thankful for is it's MRI capability, it's reliability (both as a product- our processor has very few issues- and as an overall company- one of our main reasons for choosing med-el was because they were the only brand to have never had a recall!)  We had also heard great things about their customer service.  Having been a med-el user now for 5 years, I can honestly say the more I learn about the company and the devices and implants the more thankful I am to have chosen them.  They have a lot of integrity as a company, their innovation is top notch- they are constantly leading the charge in new technology and the others tend to follow, and they really care about their recipients.  The fact that every processor they make is backward compatible (meaning it can be used with every internal implant no matter how old) really speaks to that.  

Let me know if you have any other more specific question.  Good luck on your journey!  I know how overwhelming this can all be!

[VeroNika]

22 hours ago, Alexei said:

@VeroNika That is a unique perspective and very helpful!   How do you perform on a hearing test now in that ear since so much time went by where the nerve wasn't being stimulated?

Thanks, I'm glad my perspective is of some help to you, @Alexei!

Performance in hearing tests:

- sound detection is pretty awesome (1,5 years ago I participated in a study for testing sound detection with and without using my cochlea implantat, and - if I remember correctly - got somewhat aroind 80/90%with CI)

- hearing test for speech recognition: these are a bit tricky, as they so far did it not with the connecting cable but through putting distracing-noise on my hearing ear and then testing the left ear. They have to crank the disteacting noise up pretty loud which makes it very difficult for me to focus on words in the left ear. With this test I have pretty low levels. However when using the cable to connect directly to a speech source I do better. And - but that's just said from my experience, I don't have any test confirming it - I do a lot better with speech understanding with both my left and right ear. I know it sounds funny as on it's own the left ear doesn't do too well in speech recognition, but together it is by far better. - like when I am in noisy surroundings, like a restaurant with many people, I have a very hard time understanding speech without my CI.

- hearing test as in hearing sounds: also pretty good, but I struggle with deep sounds (for me high sounds are a lot easier, but from what I"be heard from others that's different for every ci user)

I guess all in a you can say that neuroplasticity is pretty awesome, and that my hearing nerve (which luckily had the ability to develop regular before turning deaf) still manages to pass on signals pretty well, considering it was "on pause" for 18 years! ?

[Mary Featherston]

@VeroNika

[Mary Beth]

@VeroNika We have to be thankful to our “paused” auditory nerves and brain plasticity!  Smile ? 

[Mary Featherston]

@VeroNika - your experience sounds awesome!  I'm starting to get SO VERY IMPATIENT for next Thursday, when I will have my second CI activated.  It's been 20 years since I could hear with two ears and I'm incredibly excited.  @Alexei - your son may well function fairly well, but the impact of having two ears to hear with - well, you heard it from Mary Beth and Veronika and Gemma and Colleen.  Until this year I thought I was functioning fairly well as a hearing impaired person, but my one CI has completely surpassed what I heard withe my hearing aids.

And that's why I'm so excited to get the second.  Your son isn't me, but I would bet you that he would be glad to have two ears once he adjusts to the CI.

[VeroNika]

2 minutes ago, Mary Featherston said:

@VeroNika - your experience sounds awesome!  I'm starting to get SO VERY IMPATIENT for next Thursday, when I will have my second CI activated.  It's been 20 years since I could hear with two ears and I'm incredibly excited.  @Alexei - your son may well function fairly well, but the impact of having two ears to hear with - well, you heard it from Mary Beth and Veronika and Gemma and Colleen.  Until this year I thought I was functioning fairly well as a hearing impaired person, but my one CI has completely surpassed what I heard withe my hearing aids.

And that's why I'm so excited to get the second.  Your son isn't me, but I would bet you that he would be glad to have two ears once he adjusts to the CI.

Oh, this is exciting, @Mary Featherston!!I wish you all the best for your activation nest Thursday!! ?

[Alexei]

That really is amazing after 18 years!

[Alexei]

Hi there!  Just wanted to update everyone on this thread that we decided to move forward and my son was implanted in early January and activated in February.   He's doing well with the processors in terms of wearing them most of the day and he can do well with closed set words streaming directly to his CI (which is amazing considering where he came from).  But his audiogram levels seem low comparing to what others have demonstrated.   He's around 45 dB average whereas most seem to be 20-30 dB with the CI only.  Note this test was done in the booth with masking of the good ear at 65 dB.   He continues to improve with word recognition and we're putting in lots of work with direct streaming training, but I am concerned about the low audiogram thresholds and he's almost maxed out in volume in his mappings.   Does anyone have a sense of whether or not these thresholds may improve over time still?  Or did anyone have their pure tone audiogram tested over time and did it evolve.  He's had three mappings and is about 4 months out now from initial activation.  Thanks!

[Mary Beth]

@Alexei

That’s exciting!

I used to think that all CI brands worked best when the CI audiogram was flat at 25 dB.  Then I read that may not be true.  

There are several ways our audiologists can adjust our MAP settings to get a louder perception (more ways than just setting the MCL louder).

Med-El recently introduced triphasic pulses as an option when someone needs louder sounds but can not handle the higher current level without facial stim or non-auditory issues.

Are you in the US?  

[Alexei]

Good to know.  We're in the US at Mass Eye and Ear.  Should I contact my Med-el rep to learn more?  Thanks!

[Mary Beth]

@Alexei

you can contact your Med-El customer service rep and ask to be put in touch with your regional Med-El Consumer Engagement Manager.  Tell her your concerns.  Med-El has a system of support in each region for parents/CI recipients and also for our clinical audiologists.  These Med-El reps (CEM: Consumer Engagement Manager for us and CAM:Clinical Account Manager (audiologists from Med-El who support our clinical audiologists) can join in our appointments etc.  They will be able to answer your questions.

I think the CEM for Boston is Taylor.  She is terrific.

I do not know which Med-El audiologist supports Boston.

[Alexei]

Will do!  Thanks!

[Mary Beth]

Keep us posted!  Good luck!

[Mama2Lu]

@Colleen Powell I'm almost 1 year late to this topic, but I'm wondering where you live and why your son was permitted a single CI as a 3 yo? We are exploring options for my almost 3 yo son and have been told he is not eligible for unilateral CI bc of his age... ? 

On 10/22/2018 at 10:33 PM, Colleen Powell said:

Hey there!  My son Liam is bilaterally implanted.  He received his first implant at age 3 and his second last year at age 7.  He's doing awesome!  I can't necessarily speak to the benefits of a CI with Single Sided deafness, but I can tell you we've been so happy with Med-el.  The things we are most thankful for is it's MRI capability, it's reliability (both as a product- our processor has very few issues- and as an overall company- one of our main reasons for choosing med-el was because they were the only brand to have never had a recall!)  We had also heard great things about their customer service.  Having been a med-el user now for 5 years, I can honestly say the more I learn about the company and the devices and implants the more thankful I am to have chosen them.  They have a lot of integrity as a company, their innovation is top notch- they are constantly leading the charge in new technology and the others tend to follow, and they really care about their recipients.  The fact that every processor they make is backward compatible (meaning it can be used with every internal implant no matter how old) really speaks to that.  

Let me know if you have any other more specific question.  Good luck on your journey!  I know how overwhelming this can all be!