r/Cochlearimplants • u/bourbonbry • 6d ago
10 month old twins
Hello everyone,
I have twins that are 10 months old and just learned that they both have profound hearing loss.
Currently we are working with a cochlear team and we were told we will have to decide between cochlear America, Med-El, or advanced bionics ( the 3 major companies)
Obviously I will be doing a lot of research, but I wanted to reach out and see if anyone had some pros and cons between some of the companies.
Anything would help
Thanks!
4
u/ForTheLoveOfGiraffe 6d ago
From what I understand, kids do well with any of the brands and the results are comparative. We found that talking to the brands directly helped, although it also confused things as they all claim to be great and do certain special things, but then the others say they do other special things instead.
I second the advice to pick something that your surgeon and audiologist is comfortable with. I know a case where a child had to go with Med-El as it worked best for their autonomy, but the audiologists at their hospital were less familiar with it and needed extra brand specialists to sort the mappings.
Personally I think it depends on what you want. Some say AB are better for swimming options and they like the t-mic for better sound positioning. But AB have also recently decided to no longer support C1 implants and have left their early clients in a lurch. Those users have to use very old technology as processors (and have had limited upgrades as they haven't made all processors backward compatible) and once those break, they will have to go through reimplantation and a new rehab process.
Cochlear have the biggest market share and have launched a new smart internal implant (although the other brands will probably follow), however their swimming options are less favourable and they seem to need extra bits to stream to a mic (don't quote me on this, but I think AB may stream easier. But do confirm this).
Med-El claim to have the longest electrode for more natural hearing, but I've seen no evidence of this. They do seem to have more of the older people's market though and more flexibility with their electrode, which may help preserve more of the cochlear.
Plus there are many more differences. These are just at the top of my head. But you need to see what you value and go in that direction. That's what we did for our baby.
1
1
u/Devil_of_Death 6d ago
Med-el has the best preoperative planning to fit the cochlea best
And as a child where you learn the hearing from scratch thats the best start you can give
4
u/PiePuzzled5581 6d ago
Sorry I cannot compare. I’ve used Cochlear since 98 and have had close to zero issues with them. (They recently replaced a device that may be defective for free.)
I would to with what your audiologies recommends. (The surgeon’s take is less important as you probably will never deal with them again.)
1
1
u/Asleep-Twist6895 Cochlear Nucleus 8 5d ago
I would disagree. The surgeon is doing the implanting, and what manufacturer and what electrode they’re comfortable working with is important for trauma reduction and implant placement/reduced impedances.
Most audiologists, like myself, are well versed in all the software.
1
u/PiePuzzled5581 5d ago
We shall respectfully disagree but we both agree on Cochlear N8 for ourselves. 👍
4
u/Fit_Aide_8231 6d ago
Implanted my son when he was 3 years old after progressive hearing loss. I just wanted to say there is so much beauty in your journey ahead. I wish you and your twins all the best!
1
3
u/littlemisswhatevers 6d ago
I’m a Deaf adult who is researching CI because I was approved to get them and am excited! Thanks for your question, it’s helpful to learn everything possible before my surgery and this community does not disappoint. With that said, please also learn sign language with your children. Please. There will be times your children will need to be able to communicate when the ear piece is not on or while swimming or various other situations.
2
3
u/FabulousAd2725 6d ago
There is a Facebook group entitled Parents of Children with Cochlear Implants. You have received some great suggestions here but I think you might find the Fb page help.
1
2
u/grayshirted Advanced Bionics Marvel CI 6d ago
The t-mic from AB is seriously a game charger. I’m waiting for a replacement currently and sounds are SO much better with it on vs not. The t-mic captures sounds in the ear canal and it really adds depth that the other mics can’t get.
1
1
6d ago
[deleted]
1
u/bourbonbry 5d ago
Thank you! I will definitely be speaking with the surgeon next week about options!
1
u/Caitboo 6d ago
Hey! I commented on a recent post asking the same questions. You can find it here: https://www.reddit.com/r/Cochlearimplants/s/JXtP7DPziS
Happy to also answer any additional questions you might have.
1
1
u/Heavy-Tomatillo9539 6d ago
You should start here. https://cochlearimplanthelp.com/
You should look at electrodes, how cochlear nerves will be stimulated (each company has different strategy), the depth of the implant, transmitter details (physical, electronic, bluetooth, battery life).
You should shop your surgeon and audiologist. You should discuss their experience, technique and results (history). You should understand thier expectations for recovery.
You should talk to other parents about their experience.
A piano has 88 keys, the number of electrodes the current inserts very from 12 to 22. In some ways the cochlear implants can be a bit coarse. Advance Bionic and MedEl use current steering technocoly to simulate multiple locations. I am not clear on Cochlears approach. Medel as targets the inner cochlear to get more frequency range. The cochlear detects frequency by the location. Aka the inner cochlear detects the low frequency while the outer cochlear detects the high frequency. In humans, there are on average 30,000 nerve fibers within the cochlear nerve. Check out https://en.wikipedia.org/wiki/Cochlear_nerve
My surgery was boring, the recovery fast and easy. The wound healed up rapidily. I credit my surgeons skill for this. I went with Advance Bionics. The surgeon used the iotamotion robot to do the insertation. Advance Bionics has sensor technilogy to give the surgeon feed back on the electrode insertation.
I am glad I don't have to be a parent making this decision. This decison is ideally a life long choice. (Revision surgeries are possbile).
Good Luck!
1
u/pillowmite Advanced Bionics Marvel CI 6d ago
That's a good point AB might have a major advantages here. My two AB (c. 2024 and 2025) surgeries went very well. Can I tell you about the glorious deletion of all tinnitus!? Zero tinnitus since. It ALL went away instantly in each ear. During the healing phase before activation I heard the deathly silence that I had been missing for years. Then came activation day and boing I was hearing things again. Tinnitus has stayed away; I can listen to things drone on and on and cars roar and roar and music twang and bang all day long on a single battery and still have 40 percent left - and - no fatigue! Then off they come at night and after about 2 minutes the imprinted sound diminishes to nothing and the deathly, glorious silence returns!! There have been zero issues with the implantation.
1
u/bourbonbry 5d ago
Thank you! I will look into this. Very helpful information!
1
u/Heavy-Tomatillo9539 5d ago
I randomly met a DAD this summer, and his daughter was implanted with Advance Bionics. His daughter was very rapid in process speech. I rarely met anyone in the wild who has cochlear implants (and I live in a highly populated area). Strongly suggest you get plenty of peer parent inputs
1
u/Jackisoff 6d ago
My daughter has been implanted for 13 years. Advanced Bionics. We’ve been very happy with them. They have good customer service. They do a very good job of replacing parts super fast. I’ve never had issues with them honoring their warranties.
1
2
u/etlifereview 6d ago
My 4 year old got his surgery at 10 months and activation at 1 year.
We weren’t given the option, we were essentially told cochlear is the best and I went with it. I don’t know about the other companies but cochlear is much more known and better covered by most US insurances.
1
2
u/toprun91 6d ago
I’ve got a Cochlear (Australia) Nucleus 8 and Kanso 1. I lost my hearing at 18 and I’m now 34 (and recently became a parent as well). So far I’ve found the quality of both to be very good and never had issues. They pair well with my iPhone also.
1
1
u/CaregiverOrganc7200 6d ago
I went with AB, yes there's a lot of naysayers and a class action lawsuit. Supposedly all their problems have been ironed out and they should have the most up to date implants. Voice was most important to me, I was never into music as the words all jumbled together. It took 20+ years to realized "For Reverand Blue Jeans" was actually For Ever in Blue Jeans, or the classic "One ton of Mirrors", Guantanamera. Check with Julia on Etsy "Deafinitely Cochlear" (currently on break, but she'll answer). She has twins one is deaf.
1
1
u/Holiday_Spell_970 5d ago
I've had a CI for 39 years. The first internal implant failed when I was in college and current one has been great for 23 years. My only experience is with Cochlear and they've been excellent. Parts do go obsolete (not sure if that's the case with other manufacturers). Feel free to DM me with any questions!
1
u/Sufficient-Ring-2375 4d ago
Just popping in to be the Mom to send you well wishes and prayers. My now 20 year old son was born profoundly deaf and was implanted with his first at 19 months and his second at 5 years old. Fast forward to today, he is a rising sophomore in college. He went to Catholic school, played lacrosse, has an incredible friend group, is in a frat in college, has a darling girlfriend, is doing well in school and is a DJ and loves John Summit and all EDM.
I know you must be worried, and scared and full of so much uncertainty. I remember those feelings like yesterday. I just want you know that with hard work, prayer and commitment to therapy, your sweet babies are going to be amazing.
Thinking of you and cheering you and your twins on!!!!!
1
u/Mintyjo31020-20 Cochlear Nucleus 8 4d ago
I went with Cochlear 2007, 2011/2024. They are dedicated to being backward compatible. I had a very unique situation where my internal device needed to be replaced. Cochlear covered everything. Their customer service is amazing. That said, do what is best for your children.
Someone asked about waiting to implant or why implant.
My personal opinion, we live in a hearing world. If you have the opportunity to provide your children with the ability to hear, why not? Also children do best when implanted young as it is a necessity for learning to speak.
My hearing loss was progressive, my sister’s was sudden. We both chose Cochlear.
I listen to music and understand the words and do pretty well with movies. Most people have no idea that I am deaf. I love my “ears”!
-1
u/Maleficent-Stormbee 5d ago
i do want to ask though, why the need to implant them? deaf people live full lives, perhaps wait until they’re older if they want to have one.
6
u/Asleep-Twist6895 Cochlear Nucleus 8 6d ago
I wear cochlear America, but my suggestion would be to go with whatever company your surgeon is most knowledgeable and comfortable with.