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CI candidate for cohlear and nerves hypoplasia?

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I’m currently considering cochlear implant surgery due to bilateral hearing loss associated with cochlear hypoplasia type 4 (1 turn and half ) with nerves hypoplasia. However, I’m feeling uncertain about the potential success of the operation, particularly regarding whether the electrode (size 19 flex Medel) will fit properly in my small cochlea .

anyone who has undergone cochlear implantation under similar circumstances. If you or someone you know has experience with cochlear implants or similar conditions, I would love to hear about your journey and any insights you might have to offer.

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thanks

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I’ve had a but I don’t have your complications. Can I ask why you chose Med el? I’m just curious no other reason. Have you had your and scan yet?

My only suggestion would be for you to take your scans and seek a second opinion from a very experienced CI surgeon. If that’s at all possible to do.
Good luck :four_leaf_clover: to you with your decision.

This is a copy and paste from a quick internet search.
Have you had your evaluation? The evaluation should answer your concerns. If you are questioning the that evaluation getting a second opinion might be in order, as deaf_piper mentioned.
@Neville might be able to help you.

“Cochlear nerve hypoplasia (VCN hypoplasia) is a common finding in unilateral sensorineural hearing loss (). VCN hypoplasia is when the cochlear nerve is smaller in diameter than the facial nerve. It can be accompanied by other inner ear malformations of varying severity, and can cause hearing loss ranging from moderate to profound”

I think your have to talk to the surgical team? I don’t have experience with this; I don’t think we typically implant here when there is cochlear nerve hypoplasty. However, I’ve only seen unilateral hypoplasty so far, so those children can rely on their other ear. I have a vague memory of seeing someone in the USA discuss attempting for bilateral hypoplasty in advance of considering a brainstem implant.

I think you just need to have a serious talk with the about outcome expectations.

this is the response from my surgeon

"Thank you for your trust, but I would like to further clarify your situation:

  • we will never be sure of total or partial insertion of the electrode holder until intraoperatively, in fact the preoperative measurements of the diameter and length of the cochlea by and are only approximate.
  • The response of your cochlear nerve during stimulation can only be assessed post-operatively during activation sessions, and the fact that you have a hypoplastic nerve can lead to a partial response, the degree of response after stimulation cannot in no case be guaranteed pre-operatively and therefore no one can guarantee you an optimal hearing restoration result.
    I hope it’s clear.
    Your situation is very rare and delicate, if you consent, and choose to be operated on, I ask you from this Monday to submit the request for treatment to the central CNAM Monplaisir, to carry out the vaccination with a doctor as soon as possible and carry out blood test, chest x-ray and ECG to be examined by the doctor.
    Good evening"

I don’t know anything about your specific condition. Only your doctor can give you information concerning how well a may work for you. And remember, there are no guarantees that it will work for any of us.

But I have a question. Can you hear anything now? I’m asking this because part of your decision to be implanted might be based on how much you have to lose. In other words, if you can’t hear now and it doesn’t help how much difference will there be? What if it only partly helps? Is the possible benefit worth it?

I was implanted last summer and I did this type of risk/benefit analysis before I decided. My ear was useless as it was. I decided that barring some very rare surgery complication, I had nothing to lose.

So really consider the possible outcomes in advance, and how they will effect you.

Edited

In reply to @med944

Okay, yeah, that response isn’t super helpful. I think what you sort of need to ask is, “have you implanted anyone with a similar case before or are you aware of anyone with a similar case have positive or negative outcomes?”

But I agree with db4art–what is your hearing function right now? How do you communicate now (spoken or sign language?)? And what are you hoping to improve?

i m wearing phonak naida lumity up in both ears
i can hear well and i hve to face to read lips sometimes
unless i cannot understand speech in tv or any other electronics source like mobile etc
else i m struggle in noise so i have to read lips to understand

i m wish to have best hearing comprehension and up my Speech Recognition Scores
to understand speech well in any conditions
this is my current

image

Was there a time in your life when your high frequency hearing was better than this? Or is this essentially the loss you were born with? What country do you live in? If you take out your left hearing aid, do you feel like you lose much?

Does your lumity have bluetooth? That could help you a whole bunch with mobile phone, tv and other electronic devices. There are a whole lot of assistive devices that could help, too. TV connector. Roger devices. And struggling in noise can still be a problem after implants.

If I were you, I would want my doctor and audiologist to give me an honest assessment if a is right for you.

In reply to @Neville

The doctor said his situation is very rare. Not sure if this answers your question.
If the OP can get a second opinion evaluation that might be helpful.
The high frequency loss from birth could be challenging.
If finances are not an issue, sure might be worth a try.

In reply to @med944

@med944 said:

i remove my hearing aid i dont hear anything

Right, but does it make a difference to you? Do you hear just as well with only your right ear as your right and Left? Because chances are if you go forward with the surgery you will lose your residual hearing in that ear. But if that ear doesn’t contribute much anyway then the choice might be easier.

Edited

In reply to @med944

That’s wonderful news @med944, good on you. How are you going now? Have you been activated yet? What did you go with in the end?

Please keep coming back and telling us how you are going in this new hearing journey.

I wanted to share my journey with getting a cochlear implant. Making the decision was incredibly difficult due to my cochlear malformation. I had my surgery on July 22nd with Synchrony 1 Medel cochlear electrodes (size 19) and with sonnet 1 for now and rondo 3 later ( after purchase) in my left ear and kept my phonak P UP in my right ear . My activation day is next week, so I’m not sure what to expect yet, but I’m hopeful for a successful outcome . I will keep you updated with any news as it comes.

Activation day is such a difficult day to get through for most of us. I had no idea what to expect. I was wired to a computer, my Aud checked all the electrodes were working. I didn’t have any stimulation sent into my electrodes until my first napping the following week. I was totally overwhelmed with being able to understand some words not all though. I didn’t have a hearing aid paired in my other ear for 8 weeks. The amount of noises coming through the processor was amazing.

For most people they pick up environmental sounds first. I was busy trying to get more Understanding of words to worry too much about sounds. So it took me several months to get all the environmental sounds put away.

Good luck to you on activation day. Then comes the hard work of rehab.

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