MomtoIsandEm -- Please Read

Hear Again

Hear Again

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Good news! I just learned that as of January 1, Cochlear will be providing a similar advocacy service to Let Them Hear for people who choose Nucleus CIs. In the meantime, Cochlear recommends that you contact them through the bilateral link on their website.

Hear Again

Left ear - Nucleus 24 Contour Advance with 3G
Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom
Implanted: 2/1/06 Activated: 3/1/06
 
Hear again.....thank you so much for all the information. I really feel so overwhelmed right now with this insurance company, it's so hard. I actually had the customer service rep call me back after I hung up on her saying how sorry she was for handling my call so poorly. Hopefully somewhere we can get help. Thanks again!
 
Have you tried dealing with your Human Resources rep? I was having trouble with GHP and our HR rep took over. She ended up dealing with the broker after GHP kept screwin gme around. The brokers agent kept blowing her off. SHe got the agent fired. SHe dealt with the pres of the broker co and he made some things happen.
If you are not getting anywhere wioth the ins co. try going after the broker through the HR rep. If your or your husbands company switched brokers, the broker looses a client. If you push the broker, they should get involved.
Our broker initially got the ins co to cover the medical bills of the procedure. After he learned that that was the cheap side of the procedure, he tried to get GHP to cover more, they wouldnt. He was so concerned about customer realtions with us, he started hitting up shriners and several other places to get someone to help us out.
We ended up switching isn and all is good now.
Is the insurance co deniing coverage because the policy states they will not cover CI? If so, they are violating several federal laws. Check into that. Look at the policy and see what they say about covering prosthetics. If they say they will cover all prosthetics, they are discriminating against people with senseoneural hearing loss. Afterall, a CI is a prosthetic cochlea.
DO NOT EVER GIVE UP!
 
MomtoIsandEm,

Glad I could help! Good luck!! :)

Hear Again

Left ear - Nucleus 24 Contour Advance with 3G
Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom
Implanted: 2/1/06 Activated: 3/1/06
 
Lily's Dad...we did go to HR at my husbands company...I am hoping that they can do something. My father is also going to get his boss's brokerage company to pressure our insurance company. As another resort, my Dad';s boss is good friends with both Senators in Illinois and maybe they can do something? Or policy states that bi-laterals are considered experiemental and therefor not covered, no exceptions..and by the way, it's on page 24 if anyone was wondering (that's all I've heard for the last week!!!) I won't give up....I just think it's a travesty that we have to fight this hard for this, just appalling.
 
Momofisandem, I went to the bilateral forum tonight. One of the speakers that I know is an employee of Cochlear Americas. I told her about your situation. She is going to send me some info about the Cochlear reimbursement program. This is the program the use instead of going throuh LTHF. When I hear something, I will relay the info to you.

Also, I spoke with an audi that I know at Childrens hospital inSt.Louis. She knows that I talk to alot of parents about CI issues. She told me something that you can benifit from.
Apparently, the state of Illinois if starting a new govt program that will help cover the cost of a CI or a bilateral CI in children. I think she said it will go into effect jan 1. Contact your local elected offical and start checking around. If you need more info, let me know.
 
Lily's dad...thank you from the bottom of my heart. It is so hard when you hit these walls and have no clue what to do...it warms my heart that there are kind people out there that really care. I appreciate any information that you find out..and I have some more to start digging on too. MUCH appreciated. I can PM my address if you get any information that I can use!!!
 
I'll let ya know when I get the info. Then give me your address.
As far as the thanks, do not worry about it. I know what its like to fight the ins co. you will take any help you can get. We all have to look out for, and help each other whenever possible. I know for a fact that any other person involved in the CI world (especially another parent of a CI kid) would help me out.
Being involved in the lives of several small children with CI, and a dad of a CI kid, I have seen that CI parents stick together and help each other out. I have had people where that is the only bond, that I have never met, help me out. This sounds weird, but it does create a very strong bond. All of the worrying, decisions, therapy, hopes, fear and so on, puts you in a pretty small but tightly knit club.

Whether I am talking to or about Cloggy, half way around the world, or Bill or Jeff, who are both CI dads of small children that both live under 2 miles from me. I know exactly what they are going through, we all share a common bond that no one else can truly understand because they have never had to face the same things, or had to make the same tough decisions, or experienced the small miracles that happen on a daily basis. Others can find the joy in the acheivement, but they cannot be so overjoyed that they get teary eyed over the smaller achievements.
 
I know what you mean....I showed Emma pictures of Cloggy's daughter from his blog last night and she squealed..."she has bamp Mom!!!" She calls her CI her bamp.... she was so excited to see another child with one. She's seen two adults but never another child......
Everyday miracles occur here too...little things that I took for granted when my 7 year old was Emma's age. I'll never forget the first time Emma heard an airplane in the sky and was looking all around for it!!!
 
Lillys dad said:
.......................
Being involved in the lives of several small children with CI, and a dad of a CI kid, I have seen that CI parents stick together and help each other out. I have had people where that is the only bond, that I have never met, help me out. This sounds weird, but it does create a very strong bond. All of the worrying, decisions, therapy, hopes, fear and so on, puts you in a pretty small but tightly knit club.

Whether I am talking to or about Cloggy, half way around the world, or Bill or Jeff, who are both CI dads of small children that both live under 2 miles from me. I know exactly what they are going through, we all share a common bond that no one else can truly understand because they have never had to face the same things, or had to make the same tough decisions, or experienced the small miracles that happen on a daily basis. Others can find the joy in the acheivement, but they cannot be so overjoyed that they get teary eyed over the smaller achievements.
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! Q F T !​
 
That is so very true Cloggy - and I feel the camaraderie goes beyond just parents and encompases all those who have direct experience with CI's (be it personal, or a family member) I feel so "at home" here with you all :)
 
neecy said:
That is so very true Cloggy - and I feel the camaraderie goes beyond just parents and encompases all those who have direct experience with CI's (be it personal, or a family member) I feel so "at home" here with you all :)
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You're absolutely right. You girls/guys give us valuable information as well.
I really enjoy reading about the excitement regarding sounds etc, but also to get an insite of what it feels like.
(I recall asking you what it sounds like when you first attatch the coil... Lotte has no problem to start on the program she will use the whole day. Other people need to start slowly... Was it you that heared a woosh??)
 
When I attach the coil I hear whatever is in the vincinity - be it voices, music, whatever- there's no "waiting period" or needing to get used to it - in fact I've been in a situation where I didn't have my CI on and the phone rang, so I immediately grabbed the CI and turned it on and had a perfectly fine conversation.

However, when I take the coil OFF, I get what is like a high pitched "whine" sound - I guess the best way to interperet it is my auditory nerve saying "hey where's the SOUND??" as it goes from being fully stimulated to nothing. At first it was a bit odd and I had to get used to it, but now its just "normal."
 
neecy said:
When I attach the coil I hear whatever is in the vincinity - be it voices, music, whatever- there's no "waiting period" or needing to get used to it - in fact I've been in a situation where I didn't have my CI on and the phone rang, so I immediately grabbed the CI and turned it on and had a perfectly fine conversation.

However, when I take the coil OFF, I get what is like a high pitched "whine" sound - I guess the best way to interperet it is my auditory nerve saying "hey where's the SOUND??" as it goes from being fully stimulated to nothing. At first it was a bit odd and I had to get used to it, but now its just "normal."
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Love that kind of info...... thanks.
Lotte has no problems taking it off. She'll hand it over gladly when we're finished reading and singing to her....
 
neecy said:
When I attach the coil I hear whatever is in the vincinity - be it voices, music, whatever- there's no "waiting period" or needing to get used to it - in fact I've been in a situation where I didn't have my CI on and the phone rang, so I immediately grabbed the CI and turned it on and had a perfectly fine conversation.
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Ummm...I rather slowly start off without lots of noise (moderate noise is fine). If I have to start off with a loud situation, I'll do it. It just isn't pleasant until I get used to it. That is why I don't start up until I get to work and I work in a very quiet environment thankfully. Gives me a chance to get in the swing of things. Once on, it doesn't come off until the evening.

neecy said:
However, when I take the coil OFF, I get what is like a high pitched "whine" sound - I guess the best way to interperet it is my auditory nerve saying "hey where's the SOUND??" as it goes from being fully stimulated to nothing. At first it was a bit odd and I had to get used to it, but now its just "normal."
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Yea, I get that same "whine" after shutdown. It is like tinnitus but thankfully after a minute or two it is dead silence. I actually enjoy it after a day's hearing... :D
 
sr171soars said:
Yea, I get that same "whine" after shutdown. It is like tinnitus but thankfully after a minute or two it is dead silence. I actually enjoy it after a day's hearing... :D
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I think Erin has a similar opinion. She loves to hear us read her bedtime story, and sing a short song... but once we are done, she pulls the coil off, points to the reading lamp to be turned off, points to her crib, signs sleep and that is THAT.
 
momtotoes, Having to concentrate on listening gets very tiring. From reading and talking to adults with CI, it seems that at the end of the day, they are mentally worn out from listening so hard.
We usually "unplug" Lilly about an hour before bedtime everynight. This gives her an hour of unstimulated free time where she can unwind. She goes to sleep alot easier this way. On a side note, it is also a great time to work on sign and lipreading.
 
Lilly'sDad, that is great information.

I am going to start watching Erin closely to look for her signals. I have a feeling she might benefit from a wind down period, as well.
 
Yeah, I always get that weird sensation when I take my coil off, it lasts about 2 seconds. I don't really like the sensation but I can deal with it.

As for putting on the CI, I get like loud beeps (I'm not sure what to call it actually) for 3-4 seconds...not too loud, but is noticable.
 
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