Does anyone have any experience with cochlear implants?

It was discovered at a very young age that my, now 8 year old, son has a sensorineural hearing impairment in both ears. It is caused by a Mondini malformation; basically his cochlea are incomplete. Normal cochlea have 2 1/2 turns. The cochlea in his right ear has 1 1/2, but the left only has 1 turn. This has left him profoundly deaf in his left ear, and with a moderate loss in his right. According to his audiologist, his left ear will never have hearing even with aid, but his right has been aided since he was 5.

There was a conversation a few years back in which she stated he was a candidate for a cochlear implant. Up until about 6 months ago, the hearing aid on his right ear worked perfectly for him. Sometimes if someone is turned away from him or mumbling he still has trouble hearing them, but most people in his life are aware of the loss and make sure they are facing him and in loud situations, sit on his right side.

However, now that he's getting older and is getting more freedom, it's becoming apparent that this may cause some problems. For example, at our campground he is given a lot of freedom to come and go as he pleases. Most people know him/us, and we feel quite comfortable to allow him to ride his bike around the park and visit with friends at their trailers or tents. But we had a situation arise where a new family wasn't aware of his hearing loss, spoke to him in such a way that he couldn't clearly hear what was being said, and got himself into some trouble (nothing serious, just the parent thought he was being belligerent). We sorted out the problem and yet again reminded Ryan that he should always tell people if he can't hear them correctly rather than blurting out an answer. Unfortunately he's a bit shy and sometimes doesn't want to tell people about his "difference"

Also, he gets a billion ear infections a year in his functioning ear (murphy's law I guess), and always seems to have some sort of drainage in his right ear (he also has ear tubes so the drainage is quite severe and nasty). During these times he can't wear his hearing aid as the drainage stops up the ear mould and/or tubing, rendering it pretty much useless. He seems to have it off more than on nowadays.

Anyhow, I've been wondering if in his older years, a cochlear implant might help better than the hearing aid is. The hearing aid seems so directional and pulls in so much background noise, he often takes it off in frustration (situations such as gym class where it's echo-y and loud).

I know very little about the cochlear implants, just some things I've read on the internet. I do plan to inquire at our next audiology visit, but I wondered if anyone has first hand experience, or knows someone that has one and the pros/cons they've encountered.

Thanks in advance

Michelle

reply to post by Michelle129


Hi Michelle,

Came across this older post and thought that i should reply - however i hope that you have had some more helpful advice in the meantime.

My younger brother is profoundly deaf in both ears since birth and only received his cochlear implant at the age of 16 - which is pretty late in this day and age. He was not considered a suitable candidate as an infant because at that time the whole cochlear implant thing was experimental new science and they preferred older patients.

Since then, things have come a long way and doctors strongly advice to get a child implanted within the first two years of life whilst the speech & audotory sections of the brain are still developing. I would encourage you to speak to your audiologist and also to get a referral to see an ENT specialist - that is if you haven't done so already - to see if your son is considered a suitable candidate due to the age thing.

I say this because we had a very hard time getting his surgery done at the age of 16 as he was deemed too old to benefit from an implant. something to do with a research which showed that if the brain is not exposed to sound/speech whilst the brain is still developing, then it has a lot of trouble 'comprehending' sound. After spending years getting the run around from Dr Gibson & Professor Clarke's team, we were told that they would do the surgery but not provide him with the necessary follow up care and post op 'programming' because it has the potential to reflect badly on their success rate. We ultimately had to beg and plead a junior surgeon who was the afore mentioned team's 'understudy' to perform the surgery - and only on the proviso that we would keep the whole thing hushed up from the people who normally perform the cochlear implant surgery.

The operation went well - just had an issue with one of the facial nerves which resulted in bells palsy which took about 4 months to go away. But it's not a major risk factor in most cases.

I am not aware of your individual circumstances but from our experience as a family, i would highly recommend it. It made a world of difference in my brother's level of confidence and he has found new found independence.

It was a definite learning curve for my brother as the switch on. I remember he heard the toilet flush for the first time, he scared himself b/c of the loud noise and ran out of the bathroom and told us that he may have done something to "destroy the bathroom" - lol

He did have some issues adapting to the implant though. The main one was his inability to play contact sport. The main risk is that the implant is just under the surface of the main scalp muscle and a significant impact could potentially result in haemorhagging (sp?). The second issue is that the implant is an electronic device similar to a pace maker and it means that one should avoid xrays, scans, and security screening devices as much as possible - one does get a special card issued by the medical authorities exempting you from certain security screening procedures / devices to make life easier.

The good thing is that the implant is just like a hearing aid in a sense. It has a secondary 'external' part which clips on. If one gets tired of 'hearing' then it is just a matter of switching it off at the 'on/off' button.

Just in case, you decide against the implant or your son is not considered a suitable candidate i would encourage you to look into newer hearing aids. I was assisting a deaf mechanical engineer secure a contract with a large manufacturing facility a couple of years ago who had a special hearing aid of some description (i can't remember the device name) which had two components. One was clipped into his ear and the second was a box (similiar to the hearing aids of the early 80's) which he can place on a table etc and it would transmit the environmental sound to him.

Thanks so much for your very informative reply. Since starting the thread, we have been to see both my son's ENT and audiologist to discuss the implant further.

At this time they feel that he would not benefit any further from the implant as he still has approx. 45% hearing in his "good" ear, and although somewhat directional, almost full hearing in that ear when he's wearing his hearing aid. However, the reason we were told he is a candidate is that his condition can be progressive and if over time the aid does not benefit him any further than the next move could be the implant.

He can at this time have the implant on his left side as that cochlea is damaged and will not recover...but after hearing some of the limitations and risks we've decided to stick with hearing aids for now. Our son also has a neurological condition in which MRI's and CT scans are routine and needed to assess. He's also very interested in sports and limited to non-contact would probably devestate him! We have put in for a new aid though as the old one that he got when he was 5 is not cutting it anymore. It continuously has problems connecting to his FM at school and has been in for more than 15 repairs in the past 3 years (only 1 of which was my son's irresponsibility). We've gone over our list of concerns and features we'd like and his audiologist has picked one she feels is better suited for him.

Your story of your brother hearing the toilet flush for the first time brought back sooo many memories of the first day we brought our son home with his hearing aid. Someone rang the doorbell and he screamed and dropped to the floor! Luckily it's something we can laugh about now, but that first month was a tough one.

I wish your brother good luck and hope he's enjoying his new independence! And thanks again for your response.

Michelle