CI surgery scheduled.

[Condor1970]

My daughter now has her surgery scheduled to receive the Cochlear Contour implant in 1 month from now. She will be getting the Nucleus 6 processor, and a few accessories, like the TV streamer, extra batteries, etc.

This had been a long process, but somehow I feel like this is just beginning. I've read just about everything I can get my hands on, and she is nervous but also excited to do this.

Outside of just the few snippets I've read on this forum, what else should we really be aware of with cochlear implants?

For example, I read recently a guy in Kansas received a clinical trial of gene therapy for restoring hair cells in the inner ear. Anyone heard any news on the progress of that?

I can't help but wonder, if that type of treatment was to become available in the near future, how would it affect her ability to get such treatment, and have the implant removed. Even though the new Contour implant is designed to preserve as much of the ear as possible, I'm just worried about the possibility of permanent damage to her inner ear from the implant. Even the doctor and audiologist doesn't have a real answer on that one. Maybe because such treatment is not yet available, so there is nothing to go on concerning its potential effectiveness, etc.

Oh well, all we can do is hope for the best.

 

[deafdyke]

What's your daughter's background? Refresh my memory. Glad that she's excited......Is she in deaf ed? Regarding stem cells....I really think that stem cells are still a huge huge question mark.....and if they work, they will work on late deafened/exhearing people, rather then dhh kids. (except for the small minority that is postlingally dhh)

 

[Whittuck]

Hi @Condor1970,

How did your daughters surgery go? Did you get any answers from the professionals in the end?

We're also looking at getting implants for our daughter now, i have exactly the same doubts and fears about damaging her inner ear. Maybe it's mainly just me who is kind of 'mourning' the permanent damage to her hair cells. It's hard to know what she will gain vs. lose. But it does feel quite permanent if they put the implant in.

Hope you and your family are well.

Charlie

 

[Condor1970]

No answers yet. Surgery is in a month from now March 27th.

I was wondering also about the gene therapy the guy in Kansas got, because it isn't stem cells. It's some kind of therapy that is called a "notch blocker", that blocks the part of our code that prevents nerves from regrowing. When used, it made hair cells in mice grow back, so they could hear. The first human trial was done last November, but the data is tight lipped. It will of course be years before such a thing is available to everyone else.

 

[Hockey94]

Pretty sure your audiologist will tell you these kind of information and go through the process with you and your daughter on the day of activation but it wouldn't hurt to know this.

There is a magnet in the transmitter which is what connects the processor to the implant inside her head. It may take several tries to find the spot at first if your daughter is learning to put it on herself.

The magnet strength is important to watch out for. Your audiologist will check for the strength - if too strong, or not enough "strength" for the C.I and the implant to connect or for the transmitter to stay on her head without it falling off easily.

If her head feel like it is sore or aches, then it could be a sign that the magnet is too strong. It could cause discomfort/soreness.

Just would have to change the magnet for a less stronger one at your audiologist I believe.

For my first C.I, I found that my right side of my head (where I got my implant done) would start to feel sore and dis-comfortable. So I went back to audiologist and just swapped the magnet for a less stronger one.

The first few/several months is basically an adjustment period but after that, it's fine.

If she feels the sounds are quieter or she is struggling to hear, it could mean that the volume needs to be adjusted. I know I have, and while upping the volume does mean another adjustment period, it does help. Even when I was hesistant - the audiologist told me that to give it at least 2 weeks to see if I like it or not, and to make another appointment if it didn't help or if it's a bit too loud still or any other reason.

Not sure how old your daughter is, but if she's at a young age, then some of the above - she might not "know" or will be able to tell.

So I would definatley ask your audiologist questions - and she/he would be able to give the right responses - especially for age.

I was 12 when I first got my implant, and I was scared and nervous. After activation, the sounds were strange or different to me, and I know I was asking my mom - is that the phone ringing? and so on.

Sometimes my mom or dad would be asking me, do you know what that sound was? to see if I heard it or know what that sound is.

But again, I know it's a bit different depending on age - I can imagine it being a bit different for babies and toddlers then kids who are a bit older like me when I was 12.

And every person is different. Some people may not like what they hear at first during activation - as it may sound strange to them - so it's definatley an adjustment period. Some people might and be very happy/excited.

For me, I was laughing so hard because my audiologist and my mom sounded like chipmunks for some reason. It took probably 30 minutes or so for them to sound normal. After that I was happy.

(Oddly enough, my second implant on my other ear - when I got it activated - my audiologist and my mom had deeper voices which was a little funny but I was kind of scared as I didn't like it as much but it took a little bit to get it back to "normal" sounds and after that I was ok).

I hope everything turns out great for your daughter!