Newbie Intro and ?s about Nucleus Freedom

[ticklemepink]

HI! I'm a newbie to these boards in search of other CI users who might be in similar position as me. I'm a 22 year old and I've had my CI since I was 3 1/2 (in 1989... back in the Dark Ages of CI history). I got it done as part of the clinical trial in Manhattan (Not NYU, the other hospital). So until this year, I had N22 in my right ear. I lost 2 electrodes two years ago and two more this year, all in mid-frequency range which prompted me to have it replaced with Freedom. I became bi-lateral when I was 18 in 2003 and was fitted with N24 Contour. I've been mainstreamed all my life and am an oralist (with very minimal ASL, taught by deaf friends).

*Warning: A bit long post ahead*

I will admit upfront that I have a very hard time relating to a lot of "CI changed my life!" transformational stories because CI really shaped my own personality and memory. I have no memory of my life before CI. If anything, my earliest memory was being in the hospital for it and watching my surgeon wrap a bandage around my teddy bear's head so it would look like me. Um, yes, I wore a "turban" for quite a while... Trust me, my father and I were shocked when the surgeon told us in 2003 that no, I didn't need to stay in the hospital for a week, it was an in-and-out procedure and I would not have that much bandage on my head. So, bear with me if I make comments that don't seem to line with others'.

Now to the big quesiton- are there any former N22/N24 users out there who've had them for so long that changing to Freedom was a shock? My surgeon, who helped to design Freedom, assured me that N22 users tend to dislike it in the first three months but end up having no regrets afterwards. While, it's been 8 months and I feel that I've had nothing but trouble with Freedom. I definitely noticed at the beginning that I was picking more speech than I remembered. But as the time went on, it felt all a little too overwhelming. I haven't found a map that I've been happy with- my audiologist came up with maybe over 8 different map programs in the last two visits and none satisfied us. Did anyone have trouble with mapping after receiving Freedom implant?

What about the quality of the processor over the years? (I am starting to see a correlation between the quality of the processor and customer service- the more advanced CI becomes, the lower the quality of the processor (maybe trying to keep up with the demand) and customer service goes down. While in Israel, granted it was damper than I thought in Haifa, my processor nearly broke down completely, forcing me to take on a stand-by to leave my beloved country a week early. First, it wouldn't turn on and stay on. Second, I couldn't switch programs! (Now I'm stuck on the background noise reduction) Third, the volume wouldn't work and now when I touch that volume button, the whole system shuts down.

Thankfully, I have an appointment next week to get it... straighten out. But I've never been so frustrated and in tears with Cochlear in a way that if this whole thing was like a hearing aid where you can switch companies easily, I'd drop it and switch ....but CI is for life... *sigh*

Anyway, I look forward to interacting with other CI users and anyone who's involved

 

[Bottesini]

To AllDeaf!

 

[shel90]

to AD!

I am sorry u are feeling frustrated. I was born profoundly deaf and never been implanted so I dont know what it feels like.

However, I was raised orally and mainstreamed all of my life and learned ASL later on which made me wish I had ASL growing up.

Hope u will like this forum.

 

[TheIronQueen]

There are only three companies that manufacture CI's... Cochlear seems to me to be the best. Med El was not even considered, the research put it way below AB and Cochlear. AB had a lot of rumors and doubts behind it. My own trusted audi and surgeon were both against AB. They both were excited for me to get Cochlear's CI. I admit I was a bit apathetic to the whole procedure. I was kind of in a slump after I lost the rest of my hearing, it hadn't been an easy year. However, I was determined to make the most of all the help I had recieved. It was a good decision for me.

 

[R2D2]

Welcome! Interesting to have the perspective of an early implantee, we don't get that many of them here although they are much talked about in terms of the ethics of being implanted before they were too young to give their consent.

I have heard that some of the earlier generation of Cochlear implantees have found it hard to adjust to the Freedom, mainly because it is more sensitive in picking up sounds and therefore overwhelming if you aren't used to it. I'm not sure what to suggest - I hope further programming helps you get there eventually. It sounds like you are trying to replicate what you had before?

Also, may I suggest you join the Nucleus forum Nucleus Forum
and perhaps CI Hear CIHear : Miracles Happen - Hearing Is Restored

You maybe able to find others who have had the same experience who may be able to share what worked for them.

 

[john57]

What about the quality of the processor over the years? (I am starting to see a correlation between the quality of the processor and customer service- the more advanced CI becomes, the lower the quality of the processor (maybe trying to keep up with the demand) and customer service goes down. While in Israel, granted it was damper than I thought in Haifa, my processor nearly broke down completely, forcing me to take on a stand-by to leave my beloved country a week early. First, it wouldn't turn on and stay on. Second, I couldn't switch programs! (Now I'm stuck on the background noise reduction) Third, the volume wouldn't work and now when I touch that volume button, the whole system shuts down.

Have you used the dry and store that came with the freedom and what is the battery made you are using? I did had some issues with the battery cage contacts that I have to clean and the white barrier on the bottom of the cage that allows air to enter to provide oxygen to the batteries may be getting plugged. Second the Freedom still have the older coding strategies that your older implant have. Did you also tried them?

 

[ticklemepink]

Thanks for the responses! I'll try to work with my audie on the sensitivity issues. I think I'm her first patient in this position so she generally gets frustrated when it takes her longer to do my mapping than when I had the N22. She's definitely not a newbie to CI but as you mentioned, there are only few of us out there compared to the number with those starting off with N24 and Freedom.

I'm actually pretty bad about using dry and store. I didn't bring it with me abroad in the last 5 weeks because I've already blown one out trying to use the converter on my previous trip. :Oops: Generally, I use it once or twice a week. The 3G used to show signs of moisture along the top of the battery cage. Does Freedom have a way of showing such signs? I use the ones from Cochlear- the 675 batteries (Whatever they are) and if I wear the CI full time, it can go for 3-4 days. I agree- sometimes those batteries need a few seconds to circulate.

 

[LadySekhmet]

I've had one of my friends that had N24 non contour, and one had contour. One started off with ESPirt/Sprint models 9 or 10 years ago. When she switched to 3G she hated it. Then she got the Freedom, it was a little hard at first because like you said, it's more sensitive to sounds/background noise. Which is why there is specific programs to block that out. My first friend was on SPEAK. After 2 years, she decided to switch to ACE, and it was a lot better. My second friend do not want any type of SmartSound, or SS2, or anything. She's only on SPEAK, and never changed, but she liked it better than the 3G.

Also, have you tried lowering the speed of the speech strategies? There's ACE, SPEAK (which is probably you're very accustomed to), and CIS. Believe it or not, Freedom has a LOT of different methods of programming. Also, maybe the way your audiologist programmed it is over your threshold, so it may be a little different. I found that when I had the NRT done on my right, my audiologist adjusted it accordingly and everything sounded much more clearer.

Having said that, if none of this really work, and you really want to try to make the Freedom work for you...ask your audiologist to have a Cochlear representative to help with the programming. I've heard stories where the representives comes over and adjust the programming, it was a whole lot better.

As the poster above - although Freedom is water resistant, it still needs to go through Dry & Store. You can also change the microphone cover. Dirt and oils can make the CI stop through the mic. Freedom doesn't show much sign...although I have no idea what you're talking about, i never had 3G.

I have read a few stories that there has been some defective processors where there's issues with battery contacts. The life of the batteries depends on what programming you use, what DR you have, etc. ACE program is shorter battery life.

May I recommend you to get rechargeables? For me, it lasts a good 2 days, but I recharge every night. If you ever have to go overseas, it comes with international plugs. Also, you can use regular batteries if you're camping or something. This is one of the best feature with Freedom.

Take your time with the Freedom. There are some people that rather stay with 3G than Freedom.
HUGS

 

[rick48]

HI! I'm a newbie to these boards in search of other CI users who might be in similar position as me. I'm a 22 year old and I've had my CI since I was 3 1/2 (in 1989... back in the Dark Ages of CI history). I got it done as part of the clinical trial in Manhattan (Not NYU, the other hospital). So until this year, I had N22 in my right ear. I lost 2 electrodes two years ago and two more this year, all in mid-frequency range which prompted me to have it replaced with Freedom. I became bi-lateral when I was 18 in 2003 and was fitted with N24 Contour. I've been mainstreamed all my life and am an oralist (with very minimal ASL, taught by deaf friends).

Welcome, small world, my daughter was inplanted in 7/89 not at MEETH but at NYU although Dr. Pariesier was someone who we consulted with and Pat Chute was always very friendly. She used the N22 until a device failure (loss of electrodes) in 2001. She has tried the Freedom but has never really felt comfortable with it so she currently uses the 3G.
Rick

 

[ticklemepink]

Also, have you tried lowering the speed of the speech strategies? There's ACE, SPEAK (which is probably you're very accustomed to), and CIS. Believe it or not, Freedom has a LOT of different methods of programming. Also, maybe the way your audiologist programmed it is over your threshold, so it may be a little different. I found that when I had the NRT done on my right, my audiologist adjusted it accordingly and everything sounded much more clearer.

Having said that, if none of this really work, and you really want to try to make the Freedom work for you...ask your audiologist to have a Cochlear representative to help with the programming. I've heard stories where the representives comes over and adjust the programming, it was a whole lot better.

As the poster above - although Freedom is water resistant, it still needs to go through Dry & Store. You can also change the microphone cover. Dirt and oils can make the CI stop through the mic. Freedom doesn't show much sign...although I have no idea what you're talking about, i never had 3G.

I've always been on SPEAK (at least as far as I know when my audie started giving me copies of my mappings "God forbid," she said, "Should anything happen to the computer..."). To be honest, since I had relatively little control and knowledge of what was going on with my mappings other than the pitch and loudness, I have very little idea of the differences between all these programs. That's part of getting a CI when you're a little kid- you just walk in, play with the computer, and then walk out!

Slowing down the speed is definitely one of the things I will ask her to do. I do remember saying during my first month with the Freedom that I still felt like I was missing out words and she thought maybe the program needed to be faster. Oops, bad idea after all. Better to slow down a notch and miss a few words than to have my brain be overwhelmed and shut out everything. I'm not sure if CI rep will work but I may try a different clinic for more ideas when I move for graduate school if this new map still doesn't pan out. It's an issue, I think, for me to find someone who's very experienced with N22 and Freedom to figure out how to make the transition smooth.

Ha, that's my thought when I was suggested to get Freedom. My surgeon gave me a choice- N24 or Freedom. I thought about the brochure about Freedom that I've received and how it seemed to be targeting towards parents of young children who are concerned with dirt and water! 3G was also splash proof- I've worn it out while playing in the waves with friends at the beach. So I figured if 3G could handle this amount of splash, then so could Freedom... I do change mircrophone covers every 3-4 months as suggested. But anyway, I've requested my audie that when she sends in the device to Cochlear to report back to me what was the problem so that I know how to take care of it better.... sand? water? I don't know.

Thank you all sooooo much for the ideas, I feel so much better now! It is still all new to me. I think I'm just being critical because these new processors seem much more high maintenance than older models. With Spectra and 3G, I could just put them on the dresser at night, put them on in the morning, wear it all day through sun, rain, snow, sleet, and sand, then come home, put it on the dresser again, and do the cycle all over the next day. If someone stepped on the headset or body processor or dropped on a concrete, it still worked just fine.... I feel like an old woman who doesn't get the point of getting a car with GPS navigation system at no extra cost when handwritten directions would just do. Bad analogy, I know, but it's the idea.

(rick- I sent you a private message about your daughter)