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Auditory brainstem implant- does it work?

Discussion
Posted by embp2021
24/11/21 03:53 PM

Hello everybody,

my nearly 17 weeks old daughter has bilateral sensorineural severe to profound hearing loss, diagnosed at birth.

Findings from the MRI are confusing as in doctors can't properly seen whether the auditory nerve is present or not and are exploring all the options.

They mentioned auditory brainstem implant to us and said that, however, they are not so successful like cochlear implant and my daughter may not learn to speak (heartbreaking really).

They look to do further assessments and tests but it's not looking good for cochlear implant so wanted to know whether someone has experience of auditory brainstem implants that can share with me please?

Thank you! 

Discussion
Posted by cc ndcs volunteer host
24/11/21 11:09 PM

Hi embp2021

Thank you for starting this thread.  Your Community is still very new and new members are joining each week.  Hopefully, you will have some comments soon.

In case you have not read it yet, there is some information on our website about auditory brainstem implants (ABIs):

If you need any further support, please feel free to contact our Helpline team (https://www.ndcs.org.uk/our-services/services-for-families/helpline/ ).

Best wishes!

 

Discussion
Posted by andi
08/12/21 02:55 PM
Discussion
Posted by cc ndcs volunteer host
24/11/21 11:09 PM

Hi embp2021

Thank you for starting this thread.  Your Community is still very new and new members are joining each week.  Hopefully, you will have some comments soon.

In case you have not read it yet, there is some information on our website about auditory brainstem implants (ABIs):

If you need any further support, please feel free to contact our Helpline team (https://www.ndcs.org.uk/our-services/services-for-families/helpline/ ).

Best wishes!

 

Hi

we were in a similar position when my son was born after 2nd set of MRI results out local clinic (Scotland) said they would not implan a CI as they would not tell if there was an auditory nerve so we got a referal to Manchester to look into an ABI, after speaking with them they had more experience with deformed cochlea and decided to do man implant in the left ear (around 4months ago now when my son was around 19months old) tests and all indications show this has been successfu although still early days so he is still not talking. 

when we were looking into ABI I found that the blogs on here from Alexa's mum Kayleigh really helpful and also followed Theo and his bionic ear on facebook to see his journey, would recommend having a look as Theo is making amazing progress so it does fill you with hope. 

you may still decide If you do or don't want to go down that road but definitely worthwhile speaking to other parents to help give you more insight.

Either way your daughter will be amazing ❤️

Discussion
Posted by embp2021
08/12/21 03:07 PM
Discussion
Posted by andi
08/12/21 02:55 PM

Hi

we were in a similar position when my son was born after 2nd set of MRI results out local clinic (Scotland) said they would not implan a CI as they would not tell if there was an auditory nerve so we got a referal to Manchester to look into an ABI, after speaking with them they had more experience with deformed cochlea and decided to do man implant in the left ear (around 4months ago now when my son was around 19months old) tests and all indications show this has been successfu although still early days so he is still not talking. 

when we were looking into ABI I found that the blogs on here from Alexa's mum Kayleigh really helpful and also followed Theo and his bionic ear on facebook to see his journey, would recommend having a look as Theo is making amazing progress so it does fill you with hope. 

you may still decide If you do or don't want to go down that road but definitely worthwhile speaking to other parents to help give you more insight.

Either way your daughter will be amazing ❤️

Thank you so much for replying!

Im happy for your son and your family that he got implanted in the end...do you mind telling me where did you go in Manchester? Which hospital? 

Doctors are still reviewing results from the MRI and I'm hoping they'll implant her, I've heard results from ABIs are minimal and most children do not develop speech.

Yes our children are amazing! ❤️

Discussion
Posted by flower16
08/12/21 04:07 PM

Hi so I may be able to help. My Daughter has had an ABI we are 2 years post operation and switch on. She's doing great responding to environmental sounds and turns to her name. 
she's becoming more vocal. Results for ABIs are varried and are individual to each person.

Results take a lot longer than CIS and when I say a lot longer I mean years this is due to them working completely differenly to a CI. I know that there are some who are beginning to develop speech but this has devloped over a long period.

For us we always knew that BSL would be our daughters first language and that's fine it's who she is but we wanted to give her the opportunity to have access to sounds and potentially develop speech.

We are with the London team and they have been fab. I would go and talk to the team and see what they say. They will be better able to answer your questions and concerns.

Feel free to ask anything.x

Discussion
Posted by embp2021
08/12/21 04:18 PM
Discussion
Posted by flower16
08/12/21 04:07 PM

Hi so I may be able to help. My Daughter has had an ABI we are 2 years post operation and switch on. She's doing great responding to environmental sounds and turns to her name. 
she's becoming more vocal. Results for ABIs are varried and are individual to each person.

Results take a lot longer than CIS and when I say a lot longer I mean years this is due to them working completely differenly to a CI. I know that there are some who are beginning to develop speech but this has devloped over a long period.

For us we always knew that BSL would be our daughters first language and that's fine it's who she is but we wanted to give her the opportunity to have access to sounds and potentially develop speech.

We are with the London team and they have been fab. I would go and talk to the team and see what they say. They will be better able to answer your questions and concerns.

Feel free to ask anything.x

Thank you so much flower16 for replying!

I'm glad your daughter is responding to the ABI, must have been difficult to make the decision to go ahead with it. You said its been 2 years she had the op, how's the progress on speech development? 

Yes my husband and I are learning BSL and we're signing to our daughter (basic baby signs for now!) and we know that BSL will always be her first language and I have no issue with that. 
Its just that we want to give her an opportunity to feel sound, hear our voices, hear music...sea waves...

Which team are you under in London please? At the moment we are with the Royal National ENT hospital... 

Thank you so much for your help, it makes me feel less lonely ❤️x 

Discussion
Posted by jenjen
08/12/21 04:47 PM

Hello we are currently going through assesment for an ABI for our son. He's 21 months and has no cochlears so cannot have a cochlear implant. We are under the auditory implant team at st Thomas in London. We are basically at the point we need to make a decision. It's very difficult to find case studies as there haven't been that many ABI s done compared to CI. And as others have said the outcomes are less predictable and not as good as CIs. His signing and communication is really good so it is just whether an ABI will enhance this or if he's doing so well already does he actually need the surgery... We are very torn at the moment. It's great to see this thread though as like I said there just isn't that much info or support out there.



Discussion
Posted by embp2021
08/12/21 04:59 PM
Discussion
Posted by jenjen
08/12/21 04:47 PM

Hello we are currently going through assesment for an ABI for our son. He's 21 months and has no cochlears so cannot have a cochlear implant. We are under the auditory implant team at st Thomas in London. We are basically at the point we need to make a decision. It's very difficult to find case studies as there haven't been that many ABI s done compared to CI. And as others have said the outcomes are less predictable and not as good as CIs. His signing and communication is really good so it is just whether an ABI will enhance this or if he's doing so well already does he actually need the surgery... We are very torn at the moment. It's great to see this thread though as like I said there just isn't that much info or support out there.



Hi Jenjen

thanks for your message! I'm sorry to hear you're torn in making a decision.

It is a very important decision, I totally understand. We're not at that point yet and I'm already thinking 'what would I do'....my daughter is only 4 months old so we're doing baby signing but it's still so early for her to learn!

From the point of view of a 'hearing' person, it would be immensely difficult for me to be deaf, but my daughter has been born deaf so doesn't know what sound is.

She is deaf and her first language will be sign language.

Surgery For ABIs is complicated and risky, but it's still an opportunity to give her some sort of access to sound I guess. Whatever that means. If it means just hearing a dog barking on being able to say 'mummy' years later after implantation that I don't know and I don't think doctors know either.

What I'm sure about though, from now, is that our relationship with our children won't suffer the lack of words or hearing. Love is a feeling that goes beyond that.

Love is felt in the way my daughter looks at me, smiles at me, in the way she giggles when I tickle her...a hearing loss won't change that.

Our children are amazing ❤️

I hope you can soon find the answer in your heart on your next step, wishing you all the luck! x 

Discussion
Posted by flower16
09/12/21 06:37 AM
Discussion
Posted by embp2021
08/12/21 04:18 PM

Thank you so much flower16 for replying!

I'm glad your daughter is responding to the ABI, must have been difficult to make the decision to go ahead with it. You said its been 2 years she had the op, how's the progress on speech development? 

Yes my husband and I are learning BSL and we're signing to our daughter (basic baby signs for now!) and we know that BSL will always be her first language and I have no issue with that. 
Its just that we want to give her an opportunity to feel sound, hear our voices, hear music...sea waves...

Which team are you under in London please? At the moment we are with the Royal National ENT hospital... 

Thank you so much for your help, it makes me feel less lonely ❤️x 

Your welcome, I know what it was like when we were looking for information there isn't much out there due to it being quite new compared to CIs and finding another parent was even harder 😘

We are with Guys and St Thomas in London. I believe there is only two places that are able to do ABIs London and Manchester so depending on where you live is where you are referred to.We  were referred by our cochlear implant team in Bristol. After going through the whole cochlear process and only waiting for the outcome of the MRI ( which we were told at the time was a formality) we discovered it the appointment where we were expecting to be given a date for CI  operation we were told that they were unable to help. My daughter was born without the inner ear structure on either side so no cochlear or vestibular organs.

Like you we wanted to provide our daughter with an opportunity to hear with the potential for speec. it was not an easy decision and one we took a while to decide on. It's not a simple operation and there is a lot involved as it is brain surgery they are having, however it's not one we regret . She is accessing sound which she never would of been able to do before such as turning her head to look for the sounds and turning consistently to her name. In terms of speech we know that's a while off yet but we are getting a clear no and yeah and she is very vocal. She is progressing which is the important thing and knew that results are varied and come much longer than with CIs.

Hope this helps and good luck any other questions please ask.😘

Discussion
Posted by jenjen
09/12/21 06:52 PM
Discussion
Posted by flower16
09/12/21 06:37 AM

Your welcome, I know what it was like when we were looking for information there isn't much out there due to it being quite new compared to CIs and finding another parent was even harder 😘

We are with Guys and St Thomas in London. I believe there is only two places that are able to do ABIs London and Manchester so depending on where you live is where you are referred to.We  were referred by our cochlear implant team in Bristol. After going through the whole cochlear process and only waiting for the outcome of the MRI ( which we were told at the time was a formality) we discovered it the appointment where we were expecting to be given a date for CI  operation we were told that they were unable to help. My daughter was born without the inner ear structure on either side so no cochlear or vestibular organs.

Like you we wanted to provide our daughter with an opportunity to hear with the potential for speec. it was not an easy decision and one we took a while to decide on. It's not a simple operation and there is a lot involved as it is brain surgery they are having, however it's not one we regret . She is accessing sound which she never would of been able to do before such as turning her head to look for the sounds and turning consistently to her name. In terms of speech we know that's a while off yet but we are getting a clear no and yeah and she is very vocal. She is progressing which is the important thing and knew that results are varied and come much longer than with CIs.

Hope this helps and good luck any other questions please ask.😘

Hi Flower16wow it sounds like your daughter had a similar journey to my son so far.we were just waiting for the MRI to be done and get the approval for a CI when we found out the results and that he had no cochlears or balance and auditory nerves. I believe it's very rare.  It's great to hear she's doing well with her ABI now. We are prepared for a long rehabilitation if we go for surgery, but I guess even if we don't then he will still be having lots of speech therapy etc anyway. How old was she when she had the surgery and what was her recovery like? Thanks 


Discussion
Posted by flower16
11/12/21 02:42 PM
Discussion
Posted by jenjen
09/12/21 06:52 PM

Hi Flower16wow it sounds like your daughter had a similar journey to my son so far.we were just waiting for the MRI to be done and get the approval for a CI when we found out the results and that he had no cochlears or balance and auditory nerves. I believe it's very rare.  It's great to hear she's doing well with her ABI now. We are prepared for a long rehabilitation if we go for surgery, but I guess even if we don't then he will still be having lots of speech therapy etc anyway. How old was she when she had the surgery and what was her recovery like? Thanks 


Hi Jen Jen yea your son does sound similar we were told it was rare the Bristol team hadn't seen a case like our daughters before hence referring us to London. Also when we tried to research her condition we couldn't find much apart from a couple of medical papers. The London team confirmed that there wasn't much out there on it.

My daughter had her operation a month before her second birthday. She was operated on the tuesday and we went home on the friday she healed really well and we have regular visits to London for them to check her progres. Our local speech therapist and TOD co-ordinate with the London team.

Its not an easy decision to make and we took time to make it. She's 4 now and is progressing well and how they had hoped she would.

Good luck making your decision and With your journey what ever you chose. X

Discussion
Posted by andi
11/12/21 07:36 PM
Discussion
Posted by embp2021
08/12/21 03:07 PM

Thank you so much for replying!

Im happy for your son and your family that he got implanted in the end...do you mind telling me where did you go in Manchester? Which hospital? 

Doctors are still reviewing results from the MRI and I'm hoping they'll implant her, I've heard results from ABIs are minimal and most children do not develop speech.

Yes our children are amazing! ❤️

Hi 

we were referred to Royal Manchester Hospital as our local audiology team at Crosshouse in Ayr didn't have any experience with ABIs so it was either Manchester or London we would need to speak with and as Manchester was closest they agreed to take on our sons case. 

we did have our expectations set that the CI may not be successful so we did and will continue to use BSL with our son, we were very fortunate that the 1 CI that was implanted was successful and all test indicate this is working although 4/5 months on he is still not verbal but does seem to hear sounds and turn to verbal and signed communication.

hopefully once your tests are reviewed you will be given more information and can decide what your next step is ❤️

Discussion
Posted by embp2021
15/03/22 10:39 AM
Discussion
Posted by andi
11/12/21 07:36 PM

Hi 

we were referred to Royal Manchester Hospital as our local audiology team at Crosshouse in Ayr didn't have any experience with ABIs so it was either Manchester or London we would need to speak with and as Manchester was closest they agreed to take on our sons case. 

we did have our expectations set that the CI may not be successful so we did and will continue to use BSL with our son, we were very fortunate that the 1 CI that was implanted was successful and all test indicate this is working although 4/5 months on he is still not verbal but does seem to hear sounds and turn to verbal and signed communication.

hopefully once your tests are reviewed you will be given more information and can decide what your next step is ❤️

Hello!

How are you and how is it going with the CI?

any improvement on the speech side?

 Our daughter's assessment  is done and doctors are reluctunt to implant her as the cochlea is under developed and they are unable to see the nerve.

however, we have been referred to St Thomas hospital for a second opinion but also looking at ABIs.

Thanks for your help!

Discussion
Posted by embp2021
15/03/22 10:44 AM
Discussion
Posted by jenjen
09/12/21 06:52 PM

Hi Flower16wow it sounds like your daughter had a similar journey to my son so far.we were just waiting for the MRI to be done and get the approval for a CI when we found out the results and that he had no cochlears or balance and auditory nerves. I believe it's very rare.  It's great to hear she's doing well with her ABI now. We are prepared for a long rehabilitation if we go for surgery, but I guess even if we don't then he will still be having lots of speech therapy etc anyway. How old was she when she had the surgery and what was her recovery like? Thanks 


Hi JenJen,

how is it going? have you made the decision with regards to ABIs?

We have been told yesterday that we are in a very difficult position with regards to CIs as the anatomy of my daughter ears is severely compromised.

We are getting a second opinion at St Thomas hospital but also looking into ABIs.

It would be good to connect/speak if you are up to it I can give you my number?

we are potentially the only ABIs parents in the country, how crazy!

Lots of love x 

Discussion
Posted by jenjen
15/03/22 11:11 AM
Discussion
Posted by embp2021
15/03/22 10:44 AM

Hi JenJen,

how is it going? have you made the decision with regards to ABIs?

We have been told yesterday that we are in a very difficult position with regards to CIs as the anatomy of my daughter ears is severely compromised.

We are getting a second opinion at St Thomas hospital but also looking into ABIs.

It would be good to connect/speak if you are up to it I can give you my number?

we are potentially the only ABIs parents in the country, how crazy!

Lots of love x 

Hello! Yes we are going ahead with the ABI surgery at St Thomas's so would be happy to chat! Have you joined the Facebook group Children with Auditory Brainstem Implants? There's not a huge amount of kids with ABIs but you'll be surprised there's quite a few families now. We are in touch with a couple. 

J x

Discussion
Posted by embp2021
22/03/22 09:45 AM
Discussion
Posted by jenjen
15/03/22 11:11 AM

Hello! Yes we are going ahead with the ABI surgery at St Thomas's so would be happy to chat! Have you joined the Facebook group Children with Auditory Brainstem Implants? There's not a huge amount of kids with ABIs but you'll be surprised there's quite a few families now. We are in touch with a couple. 

J x

Hi Jen,

my comment was removed as I shared my mobile number so I really don't know how to get in touch with you!!

Yes I have joined the group but haven't been accepted yet...

Im glad you've decided to go ahead with the surgery, do you have a date yet?

xx 

Discussion
Posted by cc ndcs volunteer host
22/03/22 10:50 AM
Discussion
Posted by embp2021
22/03/22 09:45 AM

Hi Jen,

my comment was removed as I shared my mobile number so I really don't know how to get in touch with you!!

Yes I have joined the group but haven't been accepted yet...

Im glad you've decided to go ahead with the surgery, do you have a date yet?

xx 

Hi embp2021

I note your query on sending private messages between members of Your community.  If you would like to connect with other members offline, please visit our Facebook groups (https://www.facebook.com/NDCS.UK/) or contact our Local Groups team ([email protected]).

Hope this helps.

Kind regards

Discussion
Posted by hl
03/04/22 01:55 AM

Let me say some of our experience.  My 10 yrs old boy has profound hearing loss when he was born.  MRI incidated he is a much thinner audio nerve but doctor still suggested him to take CI.  According to the doctor, the chance of getting a successful CI is low but still, it was the 1st choice compare with ABI. He took CI when he was 1.5 yrs, result was not good.

He took ABI then at 2.5 yrs old. 

He started to learn sign when he was a baby.  As a 10 yrs old boy, he is now able to communicate with deaf with very good sign and he is able to talk and listen to parent's speech.

His communication ability with normally kids still need further improvment. In any event, we still believe I was the best decision to him of letting him to the ABI.


Discussion
Posted by jimjamjem
14/04/22 07:36 AM

Hi there,  our son was born with no vestibular nerves on either side and we had him implanted with an ABI in Feb 2013.  He was 20 months old.  Sign is his first language and always will be. He has a little access to environmental sounds, he can tell when someone is at the door or when the phone rings.  He will turn to his name if the room is very quiet but I couldn't say that he actually recognises his name, just that he heard a sound.  We researched a lot before having him implanted and spoke to an adult who had had hearing but now had an ABI due to NF2 tumours.  He described it as hearing beeps and bops.  So the washing machine spinning would be beep beep beep, speech would be a different pitch beep, the dog barking the same.  His sister had the same tumours but opted for no ABI and she said she feels very isolated now.  The chap says he would rather have a little of something than nothing.  We're from Scotland and now have Oliver mappes in Manchester every year.  
If we had to do it again we most certainly woLuke, even with the little that we know he has, we feel he's benefited from it.  Hope this helps