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Discussion
Posted by mummy123
29/07/20 10:34 AM

Hello, me and my partner have agreed to get the cochle implant for our son, I haven't really spoke to people who's got them Or parents that decided to get it done for their child(ren) I was hoping some people whos had this experience help me out with the operation and what to prepare myself for, as am so nervous about this experience for my son 

thank you for reading! 

Discussion
Posted by kat
29/07/20 10:49 PM

Hi, my daughter got bi lateral implants this time last year. Obvisouly every child responds differently but I was so scared before hand and worried we'd made the wrong decision. She had used hearing aids since she was 2 but at 15/16 her right ear suddenly went dead for no reason they could find. Due to her age she had bilateral implants at 17 - we would have preferred to space them out. The op was about 5 hours I think, I just paced the streets of London! Her head was very sore that night but the wounds healed well and she was up and about the next day. She was switched on after 4 weeks (it's often longer than that but she had to be ready for college). She had heard well with her aids and communicates through speech so picked up her new listening pretty fast. I think this was because she knew what she was listening to already. We used a lot of the online listening games and let her relearn our voices. A year later she is flying - has really good hearing in both ears, can still enjoy music as this isn't guaranteed. She practised a LOT listening to her favourite songs and it paid off. She did her ballet exams with implants and is off to uni. She found the period before switch on really tough as she is so used to listening so felt very isolated. The strange sounds at first annoyed her too but the key is wearing them as much as possible to shorten this part. She literally wore them morning to night as soon as she was switched on.

keep us posted and although I'm an expert at hearing aids I'm very new to CIs. All the best.

Discussion
Posted by codieeels
30/07/20 11:52 AM

Hey, I have 2 children both profoundly deaf and have bilateral cochlear implants. I like you was very nervous in the begginging as I never had even heard of it before. I can honestly tell you it's the best decision I have ever made. Both of my children are doing great. I would love to speak to you properly and help you through this difficult experience. If you would like to have a chat over the phone with any questions I would be more then willing to help. 

good luck! 

Discussion
Posted by mummy123
30/07/20 12:34 PM

Thank you both so much! Yeah we think it's the best for him! We have just had our first appointment with the cochlear implant place! so just wanted to know more about and that, but I have been reading online and books I got from hospital! I am so glad they work so well for your children! What ages Did your two get them done? if you don't mind me asking, my son is over 2 years will be 3 in March! my partner agreed to get it done As I wanted it done before cause I know it will help him so much in the future! So now just the waiting game For the appointments, it's just so scary about The operation! and thank you so much For replying and reading!

I hope yous and your family are keeping well during this awful time! 

Discussion
Posted by codieeels
30/07/20 01:05 PM

Aw no problem. My daughter is now 7 and my son is 4, they were both Implanted young, my daughter was 12 months and my son was nearly 15 months. If we ever did chat over the phone I would let you hear them and you would be surprised. My partner is the same as yours! He found it very difficult but now is just amazing with everything. The thing you have to remember is everyone is different. Both my children's inpants were completely different. So you will hear good storys and you will hear bad story's because everyone has a different experience. The operation ah it is awfull of course it's a big operation but please don't get stressed out children bounce back quickly both my children were running around the ward the day after opp,  Does your son have any other needs? Also was he born deaf? I was quite young when I had my daughter and it was a lot for me to take in so I honestly do understand how you feel. It is a massive decision and I'm sure you'll make the right one. Also the younger your son is implanted the better he do. You have a long road ahead and when you reach the end everything will be worth it. Just remeber an implant is not a cure for deafness like a lot of people think. 

please don't feel any question is inappropriate or silly you can ask me anything, I have been we're you are and I will help you anyway i can, like you me and my partner new no one with an implant we had never even seen it, so I think it will be good for you to have someone to speak to because unless people are going through the same thing they just don't understand. 

speak soon!

Codie 

Discussion
Posted by kat
30/07/20 05:23 PM

I'm slightly different as my daughter was 17. She was diagnosed at 21 months and wore haring aids since then but her hearing slowly got worse. It was the decision I never wanted to make as its permanent so it wasn't easy and it was also up to her too. She stayed in overnight after the op as we live over an hour away from London but she came home in the car the next day. Certainly after a day and night she was felling pretty good. We've been happy with the decision but because she takes so well before hand it was easier for her to adjust I think. She's currently in the pool, chatting away with friends wearing a waterproof kit and life is good! 

Discussion
Posted by mojo
14/08/20 10:19 AM

Hi my daughter is 2yrs old now and she had both her implants when she was 10 mths old early last year. I was the same has you, I doubted my decision to let her have them before during and after the operation. But now, just over a year later I can say it was the best thing we could have done for her , she is doing soo amazing. If you need a chat also here

Discussion
Posted by f
11/09/20 10:34 PM

Hi

my son is 9 months old now and had CIs age 9.5months (bilateral). He was born profoundly deaf in both ears. Honestly it has been the best decision ever! He has been hearing since his switch on 9 months ago and his teacher of the deaf says his speech is on par or better than a hearing 18 month old. And we’ve only had a few months of speech therapy at the beginning of the year pre Covid..honestly it’s just amazing that by hearing us talk all day he can pick things up and progress so much. We were so worried because we knew that the hearing aids would not really work as he was born profoundly deaf and it seemed like we were wasting valuable hearing time just waiting for him to get his implants. But kids learn so fast and honestly the access to sound via the CIs has been amazing! 

Discussion
Posted by becca
24/09/20 04:31 PM

My daughter, now 4 months, was diagnosed as profoundly deaf from birth.

we have just had our first appointments through with the CI team so excited and nervous to see what that journey brings!

Discussion
Posted by dani
09/01/21 09:00 PM

Hi Everyone. 

I am here to seek some advice if you can share your experience and help me out will be highly and greatly appreciated. 

My son is 5 and a half years old, diagnosed a progressive hearing loss  (EVA). Currently, he is wearing a hearing aid, but his hearing will continually drop, so we have been offered a bilateral implant.  I fully understand implant will definitely the solution for him, however, now I am very confused about what to do, shall we do both ear implants at the same time. Or we shall let him have one implant and another one continually with a hearing aid, then do the second one later on. 

I feel extremely nervous about the operation, really do not know which way is best suitable,  my husband does not want him to lose his original hearing in one shot, so only agree to do one implant.  However, the doctor mentioned, it will be difficult for a child to adapt if do one now and do the second implant after a few years. 

Kindly share your experience. Thank you very much everyone in advance. 

Discussion
Posted by mum
14/01/21 10:40 AM

Hello,

I am in the same boat as you. My Daughter is 4 and was diagnosed last week with EVA due to a sudden drop in hearing. She manages quite well with hearing aids but I have been advised that CI will benefit her as she struggles with some sounds. I struggle with the fact that she will have no access to sound while waiting for the switch on. I have read so many positive reviews but it's such a hard decision. We are just waiting on her initial assessment so will hopefully find out more then and what techniques we can use during that time. I just feel my Daughter will panic and be very emotional and scared during this time.

Discussion
Posted by Claire ndcs moderator
21/01/21 04:32 PM

Hello,

Thank you for posting your recent comments.

I’m sorry you’ve not had many responses yet. The current thread was started quite a few months ago but it would be great if you could start a new thread about progressive hearing loss and cochlear implants. That way it might be more visible to other parents.

You’re also very welcome to contact our Helpline team if you’d like any information or support.

Take care,

Claire

Your Community moderation team