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Is there any hope? Story of my wife’s hearing loss

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Edited

In reply to @Hearing_Potential

@Hearing_Potential said:

I'm not sure why you're bringing me into this conversation.

Some time ago we discussed why insist to implant better ear even when patients are afraid (rightly so) about losing they better, at least partly natural hearing (I am a bit reluctant to call hearing from a damaged ear "natural", although I understand that can be as mental shortcut).

I apologise, with new forum and new notification system, I forgot to respond in that topic.

I think that when patient is scared about losing residual hearing in their better ear, it's always better when he/she will has poorer ear implanted than no ear at all "just because ENT authoratively said that "either a better ear or none at all". IIRC (correct me, if I am wrong) that was also @Deaf_piper case.

(I want to make it clear that I'm not talking about conditions such as auditory nerve hypoplasia or bilateral prelingual deafness).

@Hearing_Potential said:

In the case discussed by the OP an ear with a sudden profound losses will generally be implanted in preference to the better hearing ear because the neurological pathways are usually intact.

In Poland, the first ear considered would be an already deaf ear, where there is nothing to lose. Do you know any e. g. neurophysiological tests, so that clinician can prove a point that in deaf ear neurological pathways are unusable?

@Hearing_Potential said:

I'm guessing that your poorer ear was stimulated during critical developmental windows so that the neurological pathways were intact so they were willing to consider it.

I am really impressed - that is indeed my case (it's not irony). I has SSHL in 1993, when I was 4yo, after asymptomatic mumps. Admittedly, I had meningitis earlier, when I was 12 months old (and gentamycin), but I developed normally, although I had no diagnostics of my hearing then. Unfortunately, mumps (MMR) vaccines were introduced 10 years later in Polish market.

I had my first (Widex Senso P8) when I was 11yo.

@Hearing_Potential said:

I think you get a higher standard of care in Australia when it comes to CI in part because the multichannel CI was invented there and you manufacture them locally.

Possibly yes, but in my case, I had evaluation in 2011 in two independent hospitals and they refused to give me CI, because I had too good hearing in better ear. And suddenly, after ~1,5-2 years, the same clinician has said "guidelines changed" and I've got CI surgery in 2013, when I was 24.

For what I know, even now, in more wealthy than Poland countries like UK or Canada, clinicians are reluctant to qualify /asymetrical patients.

@Bimodal_user said:

just because ENT authoratively said that "either a better ear or none at all". IIRC (correct me, if I am wrong) that was also @Deaf_piper case.

Yes this is what my said to me. I had unilateral loss until 2016. L ear congenital severe profound R mild/moderate loss. My R ear SSHL dropped my R ear loss to severe profound loss. My surgeon refused point blank to do my L ear. It was my good R ear or none.

In reply to @Bimodal_user

@Bimodal_user said:

Do you know any e. g. neurophysiological tests, so that clinician can prove a point that in deaf ear neurological pathways are unusable?

It's important to remember that the surgeon isn't looking for whether the pathways are unusable. The question is which ear will lead to the best outcomes. Especially when we're dealing with public funding and only one device is going to be funded they want to maximize the chances of success. Where bilateral funding is available I think there's more flexibility of choice.

There are neurophysiological tests that can assess the integrity of pathways, but they aren't routinely performed on adults and large scale datasets aren't available. Cortical auditory-evoked potentials (CAEPs) would be the best test to assess the overall system integrity. Cortical evoked potentials can also be used to check for cross-modal re-organisation where other sensory information is processed by auditory areas following prolonged deafness.

In reply to @Bimodal_user

@Bimodal_user said:

I still think it's outrageous, unless neurophysiological tests prove his/her point.

Oh I so agree with you. If you look at my and L ear, I was born with severe profound loss. As surgeon explained I’d most likely never heard any high frequency sounds. I was mid 60’s going through evaluation, seeing surgeon etc. My surgeons explanation was I hadn’t heard high frequency for 6.5 decades, it was unlikely I would get a reasonable response from a in my L ear. My SSHL R ear was 2016 the evaluation was late 2017.. He said I’d get a better response having my R ear implanted, this surgery went ahead mid 2019. I was lucky to get an excellent response from my R ear CI.

Last year I investigated going bilateral. I saw 3 CI , I saw my original surgeon and went for a second opinion from another surgeon. They all agreed, it’s 7.5 decades of not hearing high frequencies. It’s most unlikely I would get a reasonable response.

I don’t understand any of the technicalities at all. One AuD told me if I didn’t get 50% WST my hearing would be unbalanced. And that I would be best keeping what little natural hearing I have left. Which isn’t much as I can’t hold a conversation without my CI.

In reply to @Hearing_Potential

@Hearing_Potential said:

The question is which ear will lead to the best outcomes. Especially when we're dealing with public funding and only one device is going to be funded they want to maximize the chances of success.

Yes, I really know that problem with public funding from my own field of practice. And I often I make others aware of the fact that the allocation of public services does not look as simple as it might seem.

My point is that it's better to provide to non-ideal ear than non providing at all.

@Deaf_piper said:

They all agreed, it’s 7.5 decades of not hearing high frequencies. It’s most unlikely I would get a reasonable response.

Still, it is based on gut feeling and probability rather than actual objective evidence.

There are cases with even 50 years complete deafness and good outcomes. I had no response from any frequency since 4yo and it seems nerve fibers have been still intact in general after ~20 years of totally no stimulation. I know, this is anecdotal, but it shows that it isn't that simply like "0-1" statement like "you have e. g. >10 years of untreated hearing loss, CI makes no sense, IIRC that is for children/adolescent qualification, correct me if I am wrong)".

Statements about at least 50% , because otherwise it will be unbalanced is strange. Isn't current 22% is more unbalanced? And why you couldn't get high frequency response if you already has 6-8 kHz response from axoustic input? I know, you're tired of getting second opinion and that's only my a bit rant.

But I feel that The next consultant has fallen into a strong autosuggestion after reading the previous consultant, instead of forming his own opinion anew.

Okay, sorry for offtopic. Just for thoughts.

I’m really sorry you’re both dealing with this. It sounds incredibly difficult, especially with her hearing changing so much. I hope you find some answers soon. Sometimes even little things like trying a love tester3 together can give you both a brief distraction from everything going on.

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