CreatedNat

Ok, so I have another appointment with the CI center on the 25th, this time with the actual surgeon who is going to be implanting both me and my daughter when it comes time to it. My princess has another appointment mid June, shortly after she has a CT scan and an MRI. This second appointment should verify that she is a candidate, then we decide where we are going from there with her. I will not get her a CI until after I have mine. I know her experience will be different from mine, because she is so much younger, and ideally I would like to get her implanted before the age of one, so there isn't as much she needs to be able to catch up on spoken language wise. Both my girls are still signing up a storm... and learning new signs every day!
But I have made my decision, I am going with medel on my CI, I like their longer electrode, and that it looks like it should give better access to sound. I'm not sure what we will do for our daughter, hers will be a much harder decision. There are aspects that look good on each, I am interested in possibly the AB for her, because of the water capabilities, but I know she doesn't need to be able to hear in water, but if she got splashed, I wouldn't want to loose her access to sound... Anyone have any ideas on which brand is best for a child? she is using water resistant Phonak Naidas right now... which has been helpful with the rain we have had for the past few days here.
but... When I go see the surgeon on the 25th, I should be able to schedule my surgery! Wish me luck!

Deafness

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GrendelQ

Tough decision! I've read great things about Medel: here's a wonderful blog by a young woman outlining her experience .

This shouldn't be the first consideration at all, but once you decide on a CI, remember the massive amount of accessories and cords and batteries, etc, that come with, as well as understanding the software and sound strategies employed and how to achieve what you need with the right program. Sharing both the stuff outside and the stuffing inside might make sense, if all else is equal in your mind.

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CreatedNat

That is a good point... I have read Sara's blog... I have seen many blogs from MedEl and AB, but almost none from Cochlear... but that might be me. I am not sure what all comes with the CI, that is something I have not asked, but I will need to ask the surgeon, or the Audiologist. The thing that frightens me about AB is the number of recalls they have had... and I am not sure that is something I am ok with putting in my princesses head, something that has had so many recalls... but I have also heard it is the best for music... which is something she may enjoy as she gets older... I don't know what to do with hers... and I may be rethinking my decision to go with MedEl... but I do like the size of their processors... my surgeon also has implanted many more Cochlear Americas brand than anything else... But I know that one person on here, CDmegers or something like that, is a recipient from my Surgeon...

GrendelQ

My daughter has 2 Cochlear CIs, so if you have any questions, happy to answer. If you take a look at DeafVillage.com and CIcircle.org , you should find a whole range of blogs listed representing all 3 of the CI makers.

My daughter swims in the pool and ponds with her processors on regularly, her preference. They are water resistant down to 30m [edit: sorry, that should be 3ft], for 30 minutes at a time. Never worried about kayaking, sprinklers, rain, snow, sitting up in the bath, etc., but we don't use them at the beach, in salt water, or in soapy environments (shower, under bath water). I think what differentiates AB's Neptune is that it may be OK to use in the ocean, soapy bath, or deeper still water, but I don't know for certain.

Honestly, I don't think you can go wrong with any of the 3, each has some benefits over the others, each has some relative drawbacks. And each is supported differently by your local CI clinic or audi staff, which is very important to look into. As you pointed out, your child's ear structure and hearing loss type may also determine the appropriate implant -- they are different shapes. That's probably the most critical consideration and one that only your doctor can help with.

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CreatedNat

I thought that Cochlear was only safe in still water... how have her processors faired? Is she using the N5's now? Has she had any issues with them?

GrendelQ

No issues, they are fine, we put them through what they are designed to withstand. No ocean waves Yes, she uses her N5s all day, everyday -- she's had CIs since 2007 and 2008, upgraded processors to N5s for the past 2 years (although we still keep her Freedoms as back-ups, just in case). When she had just one, she often tired of it by afternoon and took it off around 4, since she's had two, we have to pry them away from her in bed, or after she falls asleep. At school (she's at a school for the deaf where ASL is the primary language), they used to remove them from the kids to help enforce the voices-off periods and always when on field trips to avoid losing something, but we typically wind them pretty securely on her ponytails, so they rarely do that anymore.

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cdmeggers

yeah, the surgeon definitely has the most experience with Cochlear's devices, but he did a great job getting my AB implant in. He has done a LOT of implant surgeries over the years.

As for what comes with the implant, pft a lot of stuffs! Batteries, recharger, color covers/caps, cables/cords, extra ear hooks, drier kit (Zypher, AB includes a Zypher with the Neptune, and CA includes a zypher in their kit, don't know about Med El), etc. You'll end up with a box full of things for your implant(s). And Rocky Mountain is a 2 processor center, so you may end up with 2 sets of everything.

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BleedingPurist

Cochlear does state clearly that the N5 is not intended for swimming and the warranty does not cover the activity you have been using the processor for. It should at least be understood by anyone reading that the N5 was not designed to withstand swimming. It was designed to handle getting splashed if she is wading in the pool or riding Splash Mountain. No one should be getting the idea that it is ok to swim with the N5 without being aware that should it become damaged it will be at your expense.

Still water is not a factor with the Neptune and it was outright designed for swimming. It is also covered by the warranty if water is the factor in any damage to it.

BleedingPurist

I believe you need to research and understand recalls better. Have you gone over the data at the FDA Maude website? You need to either be ok with implanting your daughter or not. Choosing a particular brand does not guarantee you or give you better odds of protection against failure, as unlikely as it is regardless of brand. AB has been very transparent and quick to issue recalls in a proactive manner such as the last one which involved a very small number of actually implanted devices. It will be better to be factually knowledgeable on the recalls issue across the board than to be fearful.

GrendelQ

N5s are advertised using a photo of a processor in a fishbowl. 30 meters deep [edit: sorry, that should be 3ft], for up to 30 minutes--that's quite a long, deep splash. They are designed to withstand use in pools and ponds. Cochlear would cover it even if I dropped it in the ocean. A couple of years ago my daughter's freedom-- Cochlear's previous processor which wasn't water resistant-- went through a laundry cycle. Was not damaged, yet I contacted the company for advice. They said it was covered and they'd replace it if I'd like. We had it tested, no damage, although a couple months later I opted to replace it--our puppy chewed and left it in soggy mud. Sound became staticky. Covered. They'll cover it unless you intentionally try. To damage it. Maybe bleeding purist has experienced otherwise with ab.

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BleedingPurist

Grendel,

Marketing is not a legal agreement between the consumer and the seller. The warranty is. The N5 is submersible in up to 3 FEET (.91 meters) of still water for up 30 minutes. Nucleus 5 News

It is possible you have damaged the microphone, which is not water proof, in a subtle manner due to the repeated exposure to water. She may not be hearing as well as she could and you would not know it. Microphone degradation is not always obvious. It was not designed for swimming. You may choose to take that risk, but telling people they can take it swimming is quite simply... stupid. Have you had a Cochlear rep outright tell you "Sure, take it swimming! It was designed for that!" ? I realize I may sound like I'm coming on strong, but frankly you are being irresponsible by telling people they can do something with the N5 that Cochlear never intended it to be used for, regardless of whatever pictures you think tell you it is ok. You can choose to be upset with me or re-evaluate the facts, NOT THE MARKETING, as it comes from Cochlear.

AB's warranty outright covers water damage as well as all else.

Cloggy

Welcome to AllDeaf...

Exciting journey you and your daughter will take..
Nothing on Cochlear... Strange, since they have so many users... unless it's because there's nothing to tell... Or, perhaps just not good in PR..

My daughter uses the Cochlear Freedom... and in a way... there's nothing to tell. It works as it should..
In the blog I have made for my daughter (lotte-sofie.blogspot.com) I have written about her progress and experiences, and ours..
Not so much about the CI itself.. I do not compare them since once chosen, that's it.
We chose the Cochlear Freedom because in Norway the choice was between MedEl and Cochlear. AB was taken out due to the problems they had. And after looking into it, we choose the Cochlear basically because so many people use it and we thought it looked better than the MedEl.

We have had excellent support from them. We had some problems with rechargeable batteries and Cochlear gave us new ones, without problems.
In the end, that's what it's all about. The support you get from the company that will be such an important part in your life.
And I believe all of them are good at it.. I have a feeling actually that AB is better at it than Cochlear...

Anyway... Have a look around you. Find people that have CI. Having users with the same system as you have might be an advantage. You might get good support & advice from them...

As a last advice... keep a record of what's happening.. And start NOW...
I started our blog a bit late. I wish I started it earlier, because once "on the road" you forget how it was... A blog - or other way of storing experiences - is a great way to look back... Lotte's blog is like that. Anyone can read it, but in the end it's for us and Lotte....

Take care, and ask away...

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Cloggy

About being waterproof...

In the end, CI is used for hearing and I do not believe people should make a choice on how far or deep they can swim & dive with it.
The Freedom can be submersed, and as GrendelQ said, Cochlear covers it.
We had the CI under a swimming-cap so Lotte could hear in the water and around the pool... but in the end, she chose to be deaf in the water and read lips I guess. (or.. better said.. have a valid reason to ignore us..)

Being waterproof is fine... but most of the time it's on the ears in air....

btw.. how old is your daughter....???

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BleedingPurist

I agree that a choice shouldn't made on whether it is water proof. However, people deserve to get the facts. If someone wants a waterproof processor they can swim with they should know what the facts are so they can make an educated decision. The N5 is, in fact, not a swimmable processor. People shouldn't be lead to believe it is swimmable. It's unethical to encourage others to swim with a device that was not designed for swimming.

deafdyke

Quick question....WHY is it SO important for dhh people to hear hear hear every second of every day?!?!? I don't get it..........THAT is what Sign is useful for....
I find it VERY sad that kids cannot go a SECOND without depending on SOUND SOUND SOUND.....and I say that as someone who actually LIKES her hearing aids.

GrendelQ

No, but a company cannot legally advertise something the product doesn't live up to. I expect Cochlear's products to do what they say and show they do, and to date, they've surpassed my expectations. They market the N5 in water, they cover it, we've put it to use as intended -- as a tool enabling my daughter to access sound in her everyday activities, without limitations.

Perhaps, BP, your toddler behaves differently in the pool than mine, and yours remains submerged for more than 30 minutes. I'm very familiar with how 1-6 year olds engage with the water -- and the N5 is designed to withstand that behavior. I'm impressed by the Neptune, but as an adult, I'm sure you take it on a far different voyage than my 6 year old takes her N5. I'm not telling you that you should dive or do whatever it is you do underwater with an N5. I'm not telling anyone what to do. I'm telling the OP about our experience, which remains as I described, appropriate per Cochlear guidelines, although apparently "irresponsible" and "stupid" per yours. Nothing damaged, microphones are in tip-top shape and integrity is frequently monitored (aside from me needing to remember to change the cover more often, given our rough and tumble lifestyle).

I'm not certain why you feel the need to lay down your judgment on our lifestyle or approach to wearing CIs, but I do think that what the OP could use is a little less of your 'cutting down the competition to make a commission' and a little more exploration of what you yourself experience with your Neptune. I think that freedom to conduct everyday activities without limitations is an important consideration in the selection. It weighed heavily for us. Right up there with reliability and outcomes. We made our decision accordingly.

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Cloggy

Is that what you got out of the start of this thread..?? I haven't seen "hear hear every second of every day", or "cannot go a SECOND without".

and btw.. How is Sign useful when someone wants to hear.??

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Cloggy

CreatedNat..

A thought... just have 1 brand of CI in the house. If your daughter would have a different brand than you, it would just create chaos. Plus, Your (future) expertise on the CI will benefit her as long as she has the same brand.

cdmeggers

it makes more sense to have both mother and daughter using the same brand, but it's totally up to Nat. If she wants Medel for herself and decides to go with something different for her daughter, so be it. It's what she thinks will work best for them.

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CreatedNat

Ok, I did not think that they were able to be under water... I'm not actually worried about miss Ally having to go under water and hear under water, but I don't want them to get damaged if she gets wet, or if her sister decideds to be rambunctious and push her in the pool.

Its great to meet parents of CI kids! And especially ones with cochlear. I was concerned because there were no blogs, but you are right cloggy... maybe it is because there is nothing to say!

And my girls, miss Ally and miss Maya they are just over 6 months old and are absolutely beautiful! I need to do research more to decide which is best... but what you guys are saying is right... maybe we should have the same brand.

And I am not worried about my princess hearing everything every second. Currently Ally is in the stage where she has found her ears.. and that also means her hearing aids... she enjoys taking them off, and putting them in her mouth. She has also learned that if she puts them together... her sister will look over... so she has been having a blast with that.
And I am sure that I have made it abundantly clear... I want my daughters to be multilngual... ASL first, and then english and spanish as it comes... it is important to me that my girls, ally especially have access to LANGUAGE first, so their cognetive ability is not diminished. But I want to have her implanted early so she has as little as possible to make up speech wise. I know what it was like being made fun of for my speech, and that is not something I want for my child.

CSign

CreatedNat- it sounds like you're a good mom. I'm glad you've been able to connect with other parents who have been through the process. It's up to you of course, to weigh out the pros and cons of each brand, and determine what sounds the best for you and your daughter. Although I will say that it does make sense for you both to have the same brand, so long as it fits both your needs.

Do you sign with them?

CreatedNat

Thank you for that! and Yes, I do sign with both of my girls, my King and I decided before we were wed that we would sign with our children, though at that time we were expecting to have all hearing children. I am deaf and was given ASL as a child, after my parents found out about my deafness, but was also given Hearing Aids and Speech Therapy so I could easily interact with the hearing world around me. Now looking at it, it does make sense for for both of us to have the same brand, but I don't know that medel would work very well for children. I need to speak with my husband about everything, but there is a possibility that I will go with the Cochlear brand. I still have a bit of time before I have to tell the surgeon what I have decided, so my King and I will pray over it, I am sure that God will lead us to the correct decision.

CreatedNat

that is wonderful to know!! Why do they give you a second set of the processors? Just in case something fails? Does that also mean that I would get two of the Zyphers?

Cloggy

If your children have role models for ASL and speech, there will be no problem and they will grow up with many languages.
For us, we didn't have a role model for ASL once both of us are hearing. We focused on speaking Dutch at home and Norwegian outside the house..
We do have a feeling that progress would have been quicker with Dutch or Norwegian only, but that was not an option.

Lotte was 2+ when she started to hear. You daughter won't have that disadvantage..
ASL and speech.. Powerful combination..

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CreatedNat

In my immediate family, meaning my husband, myself and my daughters, all of us (my princesses are learning so quickly). My husband is hearing and is not fluent, but he is getting better. As for my parents and my siblings, all of them do as well. They learned so they could communicate with me at all times, with or without my Hearing Aids. My older Brothers, who are 8 and 6 years older than I am, are signing with their children as well. My Oldest Brother, has a 3 year old son who is HoH, moderate loss, and he signs up a storm! My older sister, who is 3 years old than me, is expecting her first child any day now, and has told me that she will also sign with her children. This is no surprise for me, because Noreen is married to a HoH man and she is also an Interpreter now. My younger brother and sister, they have no children, but sign. My husbands family is learning, we have actually created a class at the church, (my father in law is the Minister there) so more people are able to communicate with ease.

I am happy your daughter is also bilingual, but out of curiosity, why was it not an option to do only one?

CreatedNat

I am still very new. But currently my Ally has Hearing Aids, and yes, we are discussing it, and yes, it will happen... but that does not mean that it should be moved right now.

Also, if anything that has to do with a child with, or who is going to get a CI should be in the Parents of Deaf Children with CI thread, does that mean that there should also be one for Parents of Deaf Children with HA's thread? where people would have to discuss that? I do not feel this is appropriate.

GrendelQ

I think different clinics have different policies about this, but we got 2 sets of each Freedom (and we were upgraded to N5s after a couple of years, so we have 6 working, mapped processors), although we only have 3 dry and store boxes: 1 for each side for her freedoms, and then a new one (only one) came with the N5s.

Some people keep the second set boxed for the future. We've alternated: one set pink, one black, and she chose the color she wanted in the morning. We also used our 'back-up' set frequently in her first year: there was an issue with the long cords that connected between the coil and the processor, and the cords (even right out of the box) kept wreaking havoc on her processors, so we went through 3 processors in a matter of 2 months before Cochlear identified a bad batch of cords as the culprits. That was 4 years ago, and after replacing that faulty set of cords we've never had that happen since. But we were glad to have a back-up in hand not only to use if a processor went on the fritz, but also to use to troubleshoot problems. We could swap out components to see what combination caused issues, and to see if one processor sounded different to my daughter than the other. When we go in for mappings, we carry a whole batch of processors, and the audi just lays in each program on the whole set.

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CreatedNat

that is very good to know. Thank you. I do have a question, for both Cloggy and Grendel, as well as for cdmeggers. How do you keep the CI on a child who is so small? And for cdmeggers (I am so sorry if i am spelling it wrong) does the processor itself hurt behind the ear? I am worried that after the surgery, it would hurt the incision site.

CSign

That's great that most of your family knows how to sign. That is a huge benefit for you and your girls.

When is your next appointment?

Cheetah

CreatedNat,

I have the AB CI right now. so I am talking from that experience. Each of the three companies (AB, Cochlear, MedEl) have advantages and disadvantages.

MedEl is a lot more prevalent in Europe where they are the number one Implanted device. AB is the top in the U.S.

MedEl's only advantage is the length of the electrode in the Cochlea. The thinking behind this is this allows stimulation of a greater length of the Cochlea then the other two companies. This should shorten the learning curve for people that are already used to hearing sounds and speech.

AB's advantage is they are arguably the most technologically advanced of the three CI companies. But don't worry, Cochlear is right behind them and will probably jump past AB in the near future. Another advantage is the AB Nucleus is certified for swimming. not just water resistant, but designed to be worn while swimming underwater.

Cochlear is right in the middle of the three companies. They are a sound company with a solid product. they take longer to adopt new technology which probably makes them the most reliable of the three. They are best compared with AB in terms of the internal components and compared best with MedEl for the external components. Cochlear also has better options for people with two implants.

Since I have real life experience with AB, I can best talk about how AB is the better of the three companies. I have talked with a lot of people that have AB and Cochlear implants and my finding is that both companies provide a high degree of access to speech and general hearing. I cannot tell which of the two people do better with as what I could see seems to be pretty much the same. For me, the choice came down to the technology as I felt that AB was the most advanced and had the most room to grow (this was 7 years ago and recently AB released a new programming to improve hearing speech in noisy environments).

Regardless of the implant you choose, your individual results will depend first on the success of the implantation, and second on your willingness to work. Hearing with a CI is completely different from hearing with a hearing aid. Be prepare to really work hard the first year, and if you continue to practice you should see improvements through your third year.

Feel free to PM me if you have personal questions.

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