Sunday, December 30, 2007

Calling all Ci Users!

I need some input from those of you who have a cochlear implant. Ethan is still having trouble putting on the second implant which was activated on November 20.

Over a month into the journey, he still hates to have the implant put on. I started turning the volume level down to 1 so that it wouldn't be so jarring (the only word that I can use to describe what I'm guessing he feels), and that seemed to help tremendously for a few days. I'd very quickly turn it up to 8 or 9 before putting the battery pack in his shirt and that was fine with him.

Now he is even starting to cry when I put it on with the low volume settings. Granted, he gets over it pretty quickly (but NOT easily, it takes distraction and work on our part), and we're fairly sure that he is reacting due to something other than actual pain. His pain threshold is extremely high and we usually know when he really hurts.

Could it just be that the sound quality is so foreign and strange compared to his other implanted side that it has him freaked out? For what it's worth, his first implant goes on with the volume set at 12 with no problems.

What is it like in the moment that the headpiece is attached to your head?

We see an audiologist on Jan. 9, though not the one that typically works with Ethan as she is on maternity leave. I really hope we get some clarity on this soon.

30 comments:

diber said...

I've often wondered the same thing. Sometimes Ellis fights to have his put on, but once it's on he's totally cool, he lights up and starts talking. And doesn't mind popping the coil back on.

Sometimes I wonder if it's a little kid thing. Like do you have trouble with shoes and diapers, too? *groan*

Seriously, though, I do wonder what it's like for that initial put-on after it hasn't been on, and I, too, hope that an adult CI user could articulate this.

Jennifer said...

I've already shared my CI experiences with you, so I won't again...but wanted to send cyber (((hugs))) to you...I hate that Ethan is still struggling :(. I hope the audiologist is able to give you some answers!!!

Anonymous said...

Hi! I'm a teen with an implant. I've been activated for less than a year (progressive hearing loss. I hear very well with it, but let me tell you, when it's first put on in the morning, it's very loud. It may be that the two implants combined are overstimulating when he first puts them on.

You mentioned that he keeps the volume on 12 with his first implant. On the freedom (which I have) the volume only goes up to 9. It sounds like you maybe getting it mixed up with sensitivity (the default for that is 12; max is 20) Turning down the sensitivity only decreases his "circle of sound". If it is too loud to start with (without extra noise) this won't help. To decrease the sensitivity you quickly press the decrease button and keep going down until it is at the desired number. To adjust volume, you have to hold down decrease (or increase) until it flashed V with a number. From there you adjust as you would sensitivity.

In the beginning, the implants do sound foreign. With his new implant, it is all just a cacaphony to him. It is just a bunch of noise, and he probably thinks there is something wrong since his other one doesn't sound like that. With time, it will sound better and he won't mind it. Pretty soon he'll probably be asking for the second processor! Good luck!

Eileen said...

Heather,
I wish I knew, and I am sure you have been trying to research it, so I won't even try to look it up. I just wanted to say hello, and I am sorry that he is having hard time getting adjusted to the new ci. It must be so frustrating for you! Hopefully, you will get some good information at your appointment. I'll be thinking of you all.
E-mail me anytime!
XOXO

Kyla said...

I know nothing. :( I wish I could help. I hope that he adjusts to it soon. I do think that it might be overstimulating to suddenly hear everything in both ears, even at a low volume.

Hetha said...

Hi anonymous teen,

Ethan also has the Freedom implant on each side. I don't know much about the sensitivity vs. the volume and need to learn more. That may be key here. Thanks for your input!!

Jeff said...

Hi Hetha, I think the anonymous teen hit the nail on the head. Definitely have Ethan's audiologist provide a thorough explanation of sensitivity vs. volume. Briefly, decreasing sensitivity causes sounds below a particular loudness level to be dropped completely and is generally used to remove unwanted background noise, but the overall volume output of the CI remains the same for sounds above the sensitivity threshold. And diber has a good point as well about it possibly being partly a little kid thing, which I am more than familiar with having a 2 year-old boy :)

Hetha said...

Thanks Jeff. The more I think about it, the more I think that Diber an anonymous teen are both partly correct. I intend to become much more educated next week at the audi appointment with regard to the sensitivity stuff.

If anyone else who wears a Ci wants to chime in on this I'd greatly appreciate it.

Kellan said...

I'm sorry he's having difficulty and I hope the doctor is able to determine what is going on and figures it all out!

I hope you all have a wonderful New Year and I look forward to seeing you lots in 2008 - see you then. Kellan

Drew's Mom said...

Not a CI user, not very good at this but one idea I had...

Just wondering if Ethan will wear his new implant when it is turned OFF? Maybe put it on him when it is off and see what he does?

I've read about children with simultaneous implants not wanting to wear them - even when they are off. Then you would at least know that it isn't hurting him, but rather that he is being a *stubborn* little boy!

Anonymous said...

Hi there, My name is Felicity and I am an adult cochlear implantee. If your son has a Cochlear Freedom processor then there could a start up issue. When you first put it on the sound can be very, very loud but this fades within about a minute. There is also sometimes a zap when you put it on. Its a bit like a static electricity zap but it isn't really. You get the zap and no sound unless you reseat the coil.

Hetha said...

Drew's mom: excellent idea, that is definitely worth trying!

Felicity: thank you very much for those tidbits as they are quite illuminating to say the least. He actually does jump sometimes like he's been zapped, but we don't reset the coil since we don't want to cause the sensation a second time, now we'll know to give that a shot.

Abbie said...

I have to say it sounds like instant rush of sound. If you imagine yourself listening to the stereo and the electricity goes out, that represents taking off the headset. If the electricity comes right back on, that moment of rushing sound will startle you and might seem loud, that is how I feel when I put it on.

Laurie said...

Hello! And Happy New Year! I am just now sitting down to read and catch up on blogs. . .

I'm sorry to hear Ethan is struggling with two CI's. I will tell you that I had to turn down BOTH the sensitivity and volume when I went bilateral. . .couldn't handle the "loudness". I've tried to turn it back up but it doesn't sound right. Looks like you've had some good suggestions. . .but also, he may need a different map. What program do you use? I use ADRO most of the time.

Also, if I am in church or have too much noise, I switch to telecoil to "dampen" the sound. My telecoil mix is 3:1. Hope this helps!

I've enjoyed your blog and your precious little Ethan! May 2008 be the best one yet!

Hetha said...

Abbie and Laurie, thanks so much for the added input.
Abbie: what you are referring to is pretty much what I've imagined he's experiencing, particularly since he doesn't appear to be in pain and recovers very quickly as long as Elmo is around.
Laurie: you went over my head with the specifics on programming and ratio's. Our audiology sessions don't go into that level of detail, maybe they would if Ethan were able to be more of an active participant, but they have a different approach to the pediatrics I think. I will ask about it though and appreciate you bringing it up. Do you also use Cochlear?

Happy New Year!

Abbie said...

It doesn't hurt but since my ear is pretty new like Ethans, it sounds foreign at first! Especially when the heater is on and i'm standing next to the computer, with all the rushing air and the fan going it can sound like being in a wind tunnel. One time I put it in when I forgot that I left my hair dryer going and lets say I had no need for coffee after that, I was wide awake :) I have an AB device and the sensitivity is widest that it can go but do I ever turn the volume down? No lol.

I wish you a wonderful and happy new year! :)

Laurie said...

Heather,

Sorry about that! Yes, I have two Freedoms. . .Abbie is right when she says that there is an instant "rush" of sound. It is very startling in the beginning but over time, it is more like flipping an on/off switch. Give him time.

My sensitivity went from 12 on one CI to 10 on both. My volume went from 9 for one CI to 7 for both. The telecoil is mainly for the telephone and FM systems and Ethan probably doesn't have it "turned" on. But, you might want to check on it, especially if you want him to talk on the phone to grandma and grandpa. :) I used the telecoil a lot on my hearing aids, too, when I wore them.

Thanks for your sweet comment. . . I cannot wait to be a grandma and will be headed to Texas when the baby comes!

Hetha said...

This is great information. I think I"ll try turning down the volume on his first ear a little bit and sort of follow your example Laurie.

You all are an invaluable source of information for me! It's incredibly reassuring to have your help in this matter guys!

xoxo

Kellan said...

Happy New Year Hetha - see you soon! Kellan

Loudest Mom on the Block said...

Not a user....just a mom :) I'm sorry to hear about the 2nd implant and how hard it's been. I'm sure it's just something to be worked through, but I'm also hoping someone has a fantastic solution for you. Happy 2008, and I hope you all (especially your cute, curly headed Ethan) have a wonderful year.

Melissa

BarbaraME said...

Hi Heather - I asked both my boys about Ethan's situation. They both say that putting the implant on first thing in the morning is incredibly LOUD to the point of being uncomfortable. Our audiologist actually has configured one of their MAPs as a "morning map" - it's quieter and lets them ease into hearing each day.

They both reported that they had to get used to the second implant much the same as the first so that could be what he's experiencing too.

Good luck with this!

Hugs,
Barbara

Hetha said...

Hi Barbara! Happy New Year! Please tell Tom and Sam thank you from us, we appreciate their perspective more than they know :-)

I'll ask about the possibility of a morning map at our next appt.

Mom to Toes said...

Hi Heather!

First, I have to say that Ethan is just so adorable. I love your recent pics. He has such an expressive face.

Second, we have no experience with the volume control. Erin's audi has the feature turned off.

Erin has four programs - a soft one, a "normal" one, a louder one and one for noisy settings like restaurants.

I actually thought that was standard. The audi told us the volume control gets messed with too easily on toddlers and she prefers to just leave that function off.

I have no idea if that helps. Probably not! But, Erin does still give us a hard time sometimes about her new implant. Usually at the end of the day when she is tired. She rips it off and says "no more other side".

I like Drew's Mom's idea of letting him wear it for awhile every morning when it is turned off. Then turn it on later when he is immersed in play or something distracting.

kw said...

What an adorable little boy you have!! I do not wear a CI, but I belong to an on-line support group called SWC for late-deaf,HH and oral-deaf people. We also have a group for parents and those with cochlear implants. I'm going to refer your question to someone in Say What Club. Maybe they can help. If you would like info about joining, there's a link on the right of my page under SWC. kim djembeslappin.blogspot.com

Anonymous said...

Hi,
KW referred your question to me and others on our SayWhatClub CI list (www.saywhatclub.com). One of our lists deals exclusively with CI users questions, problems. Others from there may contact you, as well.

I have been implanted for 2 years. I am not bilateral yet, although plan to be as soon as my HMO approves. Like others here have said, I also agree with the Anonymous Teen who commented. If the volume isn't turned down, the rush of sound can be 'almost' like pain. However, you've been that route and turned down the volume. You might also try turning it down even more and working it up more gradually, instead of going straight up to 8 or 9 as you said. Sometimes, not always, I can sort of 'feel' the click, as the magnet attaches and the sound whooshes in. Compare it to going from 'zero to 60 in 60 seconds, as they advertise for cars. I assume like me, that Ethan is totally deaf without the implant? It's really quite a shock. Also, you might try being sure that things around are quiet, like the tv, radio, whatever may be 'on' and adding to his distress. Best of luck with this!

Linda Binns

Hetha said...

Thank you so much KW! I really appreciate your help!

Linda, thanks so much for taking the time to come by and share your experience. I will definately take your advice on the volume.

kw said...

You're welcome Hetha! Any time you have a question, Let us know! :-) We'll try to find someone, either another ci wearer or a parent of one who can help.

diber said...

As another CI parent, I'm also deeply grateful for people who have articulated their experience.

I realize Ethan's getting used to a second CI is its own matter. For me, I get all sorts of guilt feelings when my 2yo doesn't want his put on (it's just one, has had it for almost 6mo), b/c we were so conflicted about whether to get it in the first place. So when he fights it, I want to cry and say "oh no! we ruined his perfect deaf head!!"

But I think it's mostly a 2yo thing in Ellis's case. I've been trying some more playful parenting tricks as I navigate this world of toddler for the first time. I pretend to put on the CI on my head, then Daddy's head, then maybe Curious George's head. (Or I'll try putting it on his foot, his knee, etc) By then, he's totally cracking up, and pointing to his own ear, signing, "No, it's mine!! It goes right here!!!" Works every time. heh, heh. No fights. No apparent discomfort. Silly boy.

Anyway, sorry kind of rambly...fwiw.

Hetha said...

diber those are great ideas! I need to be more playful!!!

I am Trish Marie said...

Okay, my suggestions, as Emmi has battled me on this. In combination, these have worked for Emmi...to a degree.
1. Turn it on. Let it sit a minute, then put it on. It was suggested to us by another parent.
3. Turn the volume up gradually in the mornings. The first audiologist we saw when we were in Dallas explained it like this...When you wake up in the morning, you don't walk through the house turning on every light. First, you turn on a dim one. Then after your eyes have adjusted, you can handle the brightness. If you turn all the lights on right away, your eyes have not adjusted. And well, you know that feeling. It is the same. After going all night long with now sound, they need a little warming up. She said to turn it to a low volume for the first ten to fifteen minutes, then crank it up after that. We never had to do it with the original, but I guess with two it is that much more of an assault on their ears!
2. Her audiologist believes in bringing the second one up to speed, so to speak, with the original quickly. Apparently, the difference in quality of sound drives some kiddos crazy. As soon as they stepped Emmi up to a comprable setting with the original, she settled down and quit fighting it.
Depsite these, Emmi still prefers the old implant. She will immediately replace the coil when it comes off or tell me that the old one is low on batteries, etc. However, while she tolerates the new implant just fine, she could also care less if it is not on or not functioning!

Hope all is well.