CreatedNat

it is a huge benefit for us! My nephew loves that his Ally has ears just like his... and understands that she can't hear him, even with her ears on.
My next appointment is on the 25th... so just 11 days away. That is when I should be able to schedule surgery!

Ally has her CT scan on June 4th and her appointment with the Surgeon on June 11th. Hopefully, I will be able to have my surgery before her appointments... and be activated by the time of her appointments (as few trips to Denver as possible would be so wonderful!) and Then I will also be able to know what to expect for her.

Deafness

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CreatedNat

What I am concerned about with the AB is that they have had so many recalls, I am interested in both of us being able to have the implant for as long as possible, and not have to have it replaced over and over.
How is hearing with the CI different? How much work was it? I know that my princess and I will both be fine, but I am just interested in how much work it is. I do have questions... which I will soon ask (what does PM mean?)

cdmeggers

sometimes it's just good to have a back up processor. So if your first one isn't working right, you can send it in to have it fixed and you still have a back up to use, so you don't miss anything! And with the extra supplies at your hand, if something is wrong, you can swap cables or headpieces to see if one of those is the issue too, cause if not then it's possibly the processor. As for 2 Zyphers, I'm not sure actually, but you could ask. Ask the CI center, or contact the manufacturer to get feedback from them on what's included in the kit. I'm only most familiar with AB.

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cdmeggers

As for hearing with the implant, at first it is very different. But it varies from person to person. Some people can hear and understand speech right off the bat at activation (voices just sound different, more electronic or mickey-mouse like, etc.), for others it takes quite a while to make sense of everything. For myself, it may take up to 2 years for me to really make sense of sounds and speech, because I haven't had hearing in the left ear for so long. Right now everything sounds electronic. I can hear speech, but it's all electronic sounding and just weird haha. But the brain will figure things out and make the connections, and over time everything will start to sound more "normal".

AB has had quite a few recalls, but from my knowledge, they've been pretty quick to do a voluntary recall and get the problems taken cared of (the most latest one, only 2 implantees were affected but have since gotten their implants replaced and are doing better). I have spoken with a few AB folks who still have the very first AB internal implant device, no problems, and that's nearly 15 or 20 years with that specific AB implant. All implant manufacturers have had their recalls and problems. It's a man-made product, there is always going to be that possibility of failure with any of them. Just like with a computer or any other machines or electronics. All you can do is hope for the best and do what you can with whichever device you choose.

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LoveBlue

PM - private message
Go to your profile (User CP) and on the left hand side, down a ways, you'll see Send a Message. Click this and for the "to" start typing Cheetah and his name should come up. Then type your message and send it.

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Cheetah

PM means private message. click on my name and choose to send me a private message.

I think Cochlear is currently in a recall. I have no info on MedEl. I talked an expert on CI's and basically he said that the recalls are the result of leakage... not leaking into the body, but the body fluid leaking into the device. The smaller these devices the greater the problem with leakage. I have no statistics on which company has more recalls than another company. But it it helps any, AB had two documented failures and recalled the entire line (although it was a voluntary recall, I suspect it would have been mandatory had they not stepped up and taken responsibility).


A good review of the 3 companies, their products, the recalls, and other issues can be found here: http://cochlearimplantonline.com/sit...r-Implants.pdf
This document is slightly dated as it does not contain the current products that are available today, but it does give a really good historical review of the companies and their products.

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BleedingPurist

Cochlear Implant Online is dated and includes some incorrect/hazy information. The latest info and comparison chart which also includes Neurelec is found here: cochlear implant HELP

Calvin

Mod note:

Let's make it clear here... the OP states that she is Deaf and so is her child. She is considering to get CI for herself and her child.

The Parents of Deaf Children subforum categorizes for Hearing Parents with Deaf Children. This is a separate issue here and again, the OP is deaf and states that SHE is considering to get CI as well as her child.

Therefore, this subforum is the correct place to start a thread.

Thank you.

cdmeggers

the processors might hurt your ears after the surgery. The center generally does activation at 2 weeks after surgery, so the ear(s) may still be sensitive/tender. The BTE definitely made my ear hurt, but I was able to switch to the Neptune off the ear processor so I didn't have anything on the ear for a while. But when the incision heals more, then it's not as bothersome to wear the BTE. It depends on which implant processor you get. AB's Harmony, with the Plus powercell battery, it tends to be a bit heavy on the ear. Cochlear and Med-El have lighter weight BTE's I think?

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Jane B.

I think I read in some thread that Cloggy's family came up with a way for his daughter to wear the same ones either on the ear or clipped to the shoulder of a garment.

GrendelQ

Cloggy's invention was the inspiration for our approach to placing the processors far from the ears.

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cdmeggers

yeah. if I could clip my BTE somewhere so it's not on my ear, I'd do it! But I don't have a long enough cable for the headpiece that plugs into the Harmony so... no can do. But I have the Neptune so no biggie. Slowly with each day, I am able to tolerate the weight of the Harmony BTE on my ear a bit more. Every now and then though, I do have the BTE off the ear, and just hang it from the arm of my glasses in front of my ear, haha. Hey, it works.

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Cloggy

.. or click on the name of the person you want to PM, and a dropbox will show with that option...
(Oeps.. already mentioned )

cdmeggers

By the way, here are some Cochlear blogs:
listen with your heart/speak with love.
AngelicEars
Olivia, Sophia, and Victoria
Cochlear Kids
Fille Sourde
Sophia's Grace
Life with a Profound Hearing Loss and a Cochlear Implant
Turn On My Ears!
The Account of Our Arrows
GROWING UP HARD OF HEARING IN A HEARING WORLD
thankful for my ears

Clarity Now: My Cochlear Implant Journey - I believe she's an AB user, but she is a mother of a couple of kids, and she really talks of her experiences, expectations, etc.

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CreatedNat

thank you thank you thank you!!! I have my nap time reading cut out for me!

cdmeggers

AB has a new piece that will be available this summer for the Neptune, so there's something over the ear (the T-mic with Telecoil built in, it's called the T-Com). But since Rocky Mountain is a 2 processor center, if you were to go with AB, you can request a Harmony BTE, and a Neptune, and you can alternate which processor you want to wear.

Otherwise, with Med-El and Cochlear, you can request longer cables so if you don't want to wear the processor directly on your ears but rather at your shoulders or something, you can do that. I think Med-El has the thinnest processor, and AB's Harmony is quite thick, Cochlear's is in between I think. And Med-El just came out with a smaller processor too

Have you looked at each manufacturer's websites to see what sort of accessories they have? Med-El has a mini-pack, so you have just the processor on your ear, but the battery pack is clipped to your shoulder (or wherever you want to clip it). AB also has a similar option where processor is on the ear and the battery is clipped somewhere else too, as does Cochlear.

Here's Med-El's info on the smaller processor and different processor/wearing options:
The OPUS 2 Audio Processor featuring the OPUS 2 XS Battery Pack | MED-EL

Cochlear's info:
Nucleus System Flexible Wearing Options | Cochlear

AB:
Processors - Harmony Processor | Advanced Bionics Harmony
Neptune - the first and only Swimmable sound processor in the world | Advanced Bionics Neptune

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~SG~

Mod Note: This thread has been cleaned up, also same as above quoted by Calvin.

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deafdyke

Um Grendel, until very recently body worn processors were the NORM for CI kids......and yes, there are quite a few 40 somethings, and even 30 somethings who wore body worn hearing aids!

AlleyCat

Enough said.

GrendelQ

Some strategies for keeping them on:
Top of head is our current favorite position: In this first shot, my daughter is at school, the processors (N5s) are wrapped around her pigtail near the top of her head using "snug fits", which are usually intended for wrapping around a toddler's ear. I add a barrette on the cord to the coil so that if it flips away from the contact site, it's positioned so gravity will drop it right back in place. Important to direct the microphones appropriately. The snug fits are bendy and very secure, so she or I can wind them into a braid, a french braid, or just encircle a ponytail or braid as shown here:



On the side: In this shot, as in many, they are hard to see -- her hair is black and so they blend right in, but here they are wrapped around each braided bun on the side of her head. She's flipping around a lot in competitions, so her N5s have to be really secure, she can't be reaching up to adjust in the middle of a routine, and her instructor is usually barking instructions at them in Russian, so they have to attend well.



A little bit more casual and visible, N5s here:



She also likes them woven into french braids on the side, but I don't have any shots, unfortunately.

Her Freedoms were a bit heavier, so it took a while before we used them on her ears as full BTEs. This shot below was the morning after she had her 2nd CI surgery, at this point she had moved to wearing the full Freedom BTE (no more pesky cords that were causing problems with her processors), using an ear mold from her HA days to anchor it and take the weight off the top of her ear. This worked really well for a long time, until she got tired of the annoying thing in her ear.



Here she had the Freedom on, secured with a MicLock, a soft plastic tube that attached to the ear hook on one end and the processor itself on the other, the battery component was clipped to her shirt:



In this early shot, we had placed on the mic portion of the processor behind her ear, and the controller/battery component was clipped to her back, using Babyworn accessories provided for little ones -- that's a Freedom processor.




These approaches pose a challenge when it comes to helmets and (costumes), though, so for horseback riding, skiing, or bike-riding, we tend to position the CI's more traditionally, but are looking for better ways to manage the CIs without custom carving space into her various helmets.

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CIMom

My daughter is 2 and was implanted bilaterally with Advanced Bionics at 1. She is doing great! I don't now much on Medel

We have chosen to use a kinder clip for her implants so they are clipped to the back of her shirt, 2 clips one for each implant. That has been a life saver for us. However if you use the neptune they have other wearing options.

In the beginning mostly during tantrums the 1st thing to come off were her "ears." So we went through a few cables but always received replacement parts the next day. We even placed an order 5pm the evening before and received our part by 9am the next morning. I encourage calling all customer service departments we were able to talk to someone immediately with AB and they were more then willing to answer any and all questions about their product and even their recalls. When cochlear finally called us back several weeks later, they were not honest with us, and took several more weeks to send us information on their product where AB talked to us the same day and had info sent out to us the next day. However, I would call and check them out for yourself you may have a different experience then we did.

We are very pleased with AB and our daughter is doing wonderful and has caught up to and surpassed some of her peers with her speech.

As far as the recalls go. Advanced Bionics airs on the side of precaution and VOLUNTARILY recalled their product after 1 or 2 devices failed where as cochlear has recently went through or maybe still going through a recall in which the FDA mandated they recall after more then 100 devices failed and they are choosing to implant old technology where AB did not want to settle for old technology, they shut down their production line until they evaluated the problem.

Would love to type more but need to get going.

Good Luck!

CreatedNat

Thank you! This is exactly what I needed to know! (For myself and for my princess!!)
Thank you for the wonderful answer! (and your daughter is absolutely beautiful) My husband and I feel as though we have been called to adopt, though we know because of my age, we are going to have to wait a while.

CreatedNat

my experience was a bit different than that. I requested information from all 3 manufacturers, and the one that took the longest was actually AB, it took almost a month to get an information packet sent out. Cochlear was first, and I was impressed by their product. Then MedEl. What I liked about the MedEl was the longer electrode, but after doing more research, I have found that doesn't actually make a difference, at least not much. We are heavily considering Cochlear now.

Oh Grendel, how did you get a pink processor for your daughter? I would love to have pink for my princess, and maybe even for me! (although, having different colored processors could help distinguish our CI's from each other)

cdmeggers

When you make the choice and make your order with the CI Center for whichever device you choose, you can pick which colors to get. It's pretty nice. I don't know if the N5 has a completely pink processor, but I believe they have a pink color cover so you can put it on the processor. They have different color/design covers.

Also you can go to Skinit.com and pick/design skins for the processor too. Med-El is the only one who doesn't have a contract with Skinit for further customizations of processor color/designs, AB and Cochlear both work with Skinit. You go on there, find the processor info and pick what design you want and the company will custom-fit it for the processor. I haven't used Skinit yet because they're a bit pricey for my liking, but they do have discount codes/sales every now and then from my understanding.


Cochlear | Skinit
AB | Skinit



For myself, I always got info/responses from AB and Cochlear pretty quick, but MedEl was extremely slow, or I didn't hear from them.

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RoseRodent

Because I don't find that BSL comes out of the speakers when they make announcements at the swimming pool that they are about to turn on waves, open and shut rides, that anyone wearing a red band should leave the pool. The lifeguard does not whistle in BSL if they want my attention and if you enter a swimming race the starting beeps do not go off in BSL. If you are learning to surf, waterski, snorkel, swim, windsurf, kayak, etc. then either you have to find a BSL instructor or find a waterproof hearing solution. If I want to gain something from an elite technique swim class I'm going to need to be able to understand exactly what the instructor is trying to convey. If I'm swimming for fun it doesn't bother me whether I hear or not.

More important for me, though, is i like to relax in the bath. Take off the hearing aids and along comes the tinnitus, which as relaxing as having someone come in and bang my head against the wall. Being able to put my hearing aids on in the bath with my hair all wet and not worry about what might happen if one fell in would be marvellous. I don't need to be able to hear things, the object of the game in fact is to not hear things!

(Sorry for the sidetrack)

Cloggy

Well... I'm sure you were busy editing your posts, so you missed this:
In this context, how does ASL help with "hear hear hear every second of every day"

Please enlighten us...

Cloggy

Love it.. :-)
Excellent sidetrack from an expert......

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Cloggy

Excellent info...
We have done similar things. The thing we also tried.. very briefly was wig-tape, but Lotte hated that... And it would come loose anyway.

Basically, having them off the ear makes life so much more comfortable for the child, and nothing to worry about for the parents... Win-Win..

btw.. GrendelQ.. Can I use your post in my blog?
It's a great explanation and the more people see it the better..

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Cloggy

There are covers for the microphones that can easily be changed between colors. When using the three little batteries, the cases for these can also easily be change for color. WHen using rechargeable batteries, you need to pick a color, or buy lots of them.. (Expensive)
In the end I think that a color that matches your haircolor would be the best.
And the processors (and coils) can be decorated with stickers that are used for mobile phones.. "Bling it yourself"
So.. my advice would be to go for neutral and then decorate it...

btw... found this contraption to keep the processors in place...
(.. but what keeps the band in place..?? if the band moves.. both processors & coils are moving...)

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CreatedNat

Yes, Cochlear, from what I have seen, only has 5 colors, none of them pop, but I guess It wouldn't be the end of the world if people couldn't tell that either of us were wearing a CI.

What we have to hold her hearing aids in place right now, and it has been working fairly well, except they are a bit big on her right now, is what is called a Pilot Cap during the winter time, and on cold days, it works very well, but the closer we get to summer and the 90+ days we have been having... it just makes it difficult to get her to be ok with it on. I like your idea having them on her back, or Grendels of putting them in her hair (if she ever gets any hair!) Do you have any patterns that you would be willing to send me for them?