A cochlear implant - any experience?

[_Vicky_]

hi all

I hope you don't mind me posting this - I am posting this on behalf of my friend her three year old son has a cancerous brain tumour and has had had extensive surgery to date as you can imagine. The option of an implant has arisen and to put him through yet more surgery it would need to be worth it. So she is looking for opinion/experience and I thought someone out there may be willing to share.

Thank you in advance for any information x

 

[Marleysgirl]

The deaf community seems really divided on the subject of cochlear implants - there's an interesting article on today's BBC News website by actress Rita Simons about her daughter's deafness and their consideration of implants: https://www.bbc.co.uk/news/health-17365141

Although you will get answers here, I would suggest that you or your friend take a look at the NDCS (National Deaf Children Society) website for more information about implants. They have their own forum on that site.

Implants have just been mentioned, for the first time, in respect of our little boy. I am against the idea but that is our personal decision based on our own circumstances and our boy's particular problems.

 

[soapstone]

My daughter was born with profound hearing loss. She received bilateral cochlear implants at 10 months and is doing phenomenally. At 16 months she has caught up to her typical hearing peers. She has over twenty words and can hear at near normal levels. If I had to make this choice over again I would in a heartbeat.

 

[fordy]

hey ya, i have a cochlear implant myself, i went deaf at the age of 4, im now 30 yrs old and recieved my implant at the age of 14, i wish i had the operation ALOT sooner, i went from having NO hearing to gradually up to 80% hearing, i can now speak on a phone listen to music u name it! it made my life so much easier and happier i now have 5 children and one of them is deaf, his hearing has gone down hills alot faster than i did, and will be having the cochlear implant operation next year, it hurts me to see my son struggling to hear not getting any benefit from his hearing aids. ive also got an older brother and younger sister with the cochlear implant,

 

[Charliej101]

We're in the early stages of considering an implant so can't provide much experience but I would suggest asking for a referral to the implant team. They will not have to make a decision straght away but it will get the name in the system and provide an opportunity to find out more. They will be able to change their minds if they feel it is not right for their child and if they do decide to have them there will less waiting because they've already started the process.

We have met with the team to ask questions and talk more about the process. Our implant centre also run information days for parents. NDCS provide booklets with information and experiences of cochlear implants and The Ear Foundation run an information day for parents.

 

[Tiff]

A member of our family has them, its been a godsend for him.

 

[_Vicky_]

Thank you everyone - I will pass all your comments on

Xxx

 

[lady3]

I think it really depends on your friend's son's experience and the family's opinion. Some things for your friend to think about and ask the implant team would be

Was he hearing and went deaf from medicine or the tumour? Children who are implanted at a later age (after 2 years old) generally do better if they already had experience of speech and sound (although that's not to say that he woudn't benefit). Will surgery at the implant site be around where he had surgery before? Will this have an effect?
Is he likely to have any more surgeries with the tumour and will the implant be ok with any future tests he may need related to the tumour?
What's his access to sound and language at the moment?
What does the little boy think? (This is controversial, but I think even at 3 he will have an opinion) It may help persuade the boy one way or the other.
How is his general health right now?

What a difficult decision for parents to make. Talking to an implant team is a must, as well as somebody else posted, direct your friend to the NDCS website. The forum there is very good with parents with lots of different experiences.