Any recommendations - significant loss

I agree that one should always rule out a CI before moving to a CROS.

CROS is giving up on stimulating an ear, and over time that may reduce the chances of a good outcome with a CI.

There are people (postlingually deafened) who have a 100–120 dB response up to 1000 Hz and no response at higher frequencies on their audiograms. Despite this and 0% in WRS, they are so scared of surgery. I have heard stories about spending the equivalent of about $15,000 over 5–10 years on HAs.

It is not funny to listen to those stories. Firstly, due to unnecessary fear of surgery which could improve their lives, secondly, because of the huge discrepancy in cost-effectiveness comparing HA in those cases versus CI. These $15,000 could be saved.

Surgery is scary though. It’s much less scary after the fact, but can be really quite scary looking forward to.

Yeah, in part you are correct @Bimodal_user from my perspective, but there is more too it than that, for instance a CI Surgeon is always going to choose the better ear, it is their biggest chance of a successful outcome, but a lot of prospective CI clients would choose the worst ear, therefore hedging their bets, if it goes wrong, they haven’t lost that much! Then there is the rehab, which you have to be fairly determined in order to have that successful outcome, not everyone is going to have that determination! Then there is your lifestyle, like me you might be retired, in the UK, they are extremely stringent on what qualifies for a CI, I know, I fought the NHS for around 25 years, they endlessly moved the goalposts, believe it or not, one of the reasons I was given, was “I was such an excellent lip reader” so they couldn’t give me an implant, I did point out, people don’t always talk to me “face on”, and lip reading isn’t much use, in the dark or in low light! Approximately 3 years ago, an NHS A.uD offered to send me to Kilmarnock for CI assessment, I said no, he gave me 3 months to make up my mind, I still said no, it wasn’t that I was frightened, apprehensive maybe, if it had been 5 or 10 years earlier, I would have bit his hand off with that offer! I thought about it logically, I was about to retire from work, I am in the pubs playing pool a couple of nights per week, but I don’t have to talk much… My wife is an excellent and very clear speaker, she is an excellent BSL user, ( Level 3, British Sign Language) and a former Social Worker for the Deaf, with some 35 year’s standing, I have nearly every Phonak Roger ALD, if I need to hear, I can… Did I want to go through the pain & perhaps suffering of an Op, then do the rehab, the advantages didn’t outweigh the negatives, and ultimately if it didn’t work, my hearing would be kaput, so I basically thought, why risk what you already have, it is not imperative that I hear well anymore, yeah, it would be nice, but, I am quite content the way I am, and I can afford new aids every couple of years… Cheers Kev

Here it seems to be typically the worse ear that gets implanted first. I think our surgeons understand that most patients don’t want to risk their better ear. In the UK presumably patient consent is still king, if one refused to have the better ear implanted… Would they just not get an implant?

UK seems less likely to implant, America is more likely to implant, and Canada is maybe somewhere in between.

Differences between our countries are odd. My dad had a patient in his 80s with an unusual type of cancer that was easy to treat with a specific type of treatment. Patient wanted to return home to England to see his family, but the treatment wasn’t available to him in England because of his age. My dad called all over the place perplexed because it seemed like a simple treatment to him, but they wouldn’t do it. This was decades ago. But I suppose everything has to run it’s way through the various national regulatory boards before becoming the standard, and depending on the specific thing one of our countries may be ahead or behind not because of different research but because of different beaurocracy timelines.

@kevels55 said:

In the UK, so I have been led to believe, the CI surgeons, invariably always choose the good ear first… It would appear you have very little choice in this matter?

No, patients always have the final say on that matter. I think it is rather impossible to force the implantation of an ear that is fully aidable by HA. I think it is also unjustifiable thinking of making qualification justification in reports to the “NFZ” (polish National Health Service).

Not to mention - unethical.

For clarification about Poland rules:

Polish “audiolog” is a separate medical specialist that stemmed from otolaryngologists (ENT). Roughly: An audiologist is to an ENT as a cardiologist is to a cardiac surgeon.

CI evaluation is in the Audiology and Phoniatry ward by a physician audiologist. That doctor makes the final decision about qualification for CI surgery.
An ENT surgical subspecialist (otologist) consultation is performed, with CT and MRI results, to rule out potential anatomical issues.

@kevels55 said:

Big D being mainly Pre-lingualy Deaf, with BSL as their first language, little d are basically the HOH of this world, Elspeth’s services would be called upon at the pre-assessment stage, and indeed the after surgery follow-ups, interestingly, most BSL couples whom had a Deaf Child, nearly always opted for “No CI”, they wanted that child to remain as part of Deaf Culture, most regarded CI’s as an extreme threat to their culture!

Yes, it’s happens also in my country. I agree with all of your insights.

It was initially incomprehensible to me, but I tried to understand their perspective and grasped their potential fear for their child, who may not relate to their world, or their fear of a world with few who could relate to their experiences. Not to mention the potential closure of schools for the deaf or other relevant institutions due to their small population…

So, refusing to provide CI for their children is currently still shocking, but somewhat understandable.

@Bimodal_user said:

No, patients always have the final say on that matter.

Not in the UK. My friend has just been accepted for a CI and wanted her bad ear implanted but they have insisted on her good ear being implanted with a CI/HA type CI, can’t remember what they are called.

Maybe the bad ear has been unaided for decades? That sort of thing would preclude a CI if the auditory deprivation were bilateral. I think research on outcomes when it is unilateral is still evolving.

@Bimodal_user said:

but I would never ever let anyone proceed with CI on my better ear now.

I wasn’t given an option in selecting what ear gets the CI in Australia. I was referred for my L ear, surgeon said I won’t get a good result because of its congenital loss. My R ear had a SSHL 3 years prior leaving me with bil severe profound loss. So in the end I had no say in it, my surgeon chose what ear. I just wanted to hear so I just had to go with his decision. Yes I could have said no to the surgeon, but as my life was a struggle, being told to retire because I couldn’t hear, I agreed to him doing the R ear. But ultimately it was my surgeons choice.

@Neville i agree with you, that heading into CI surgery it’s a huge decision. If you have a responsible surgeon who discusses all of the possible complications with you. The worry you go into surgery with is very real and daunting. As some of the possible complications could be serious. Hence why I sat on the fence for 18 months. Fortunately my CI was a total success.

@Zebras said:

Not in the UK. My friend has just been accepted for a CI and wanted her bad ear implanted but they have insisted on her good ear being implanted with a CI/HA type CI, can’t remember what they are called.

Yeah @Zebras, that is my understanding of how it works here in the UK, the CI surgeon decides which ear to implant, it is up to you to decide if you accept their recommendations, invariably they will nearly always pick the better ear, if you don’t accept their recommendations, then the implication is, you will not be implemented… The policy is I believe, firmly seated in economics, the better ear, has the better chance of a favourable outcome… I believe the cost is around £24k, and they probably don’t want to do it twice, so the law of economics kicks in, and they pick the ear that gives them the most chance of that favourable outcome. Unfortunately, it isn’t down to patient choice, well in theory it is, you can take it or leave it, in my book, that is an unacceptable risk, especially if your bad ear is profound across the board… Cheers Kev

@Deaf_piper said:

Yes WRS A slight difference between them. L was 22%, R was 26%

Rather negligible difference. I thought there was a larger gap.

@Deaf_piper said:

Yes I was born 7 weeks premature-L ear severe profound loss.

So you were screened for hearing loss as an infant? Or was that revealed later in your life?

@Deaf_piper said:

He explained that as I hadn’t ever had high frequencies in my L ear for over 6 decades, he was concerned I wouldn’t get a “good” result from my L ear

But you use a hearing aid in your left ear and have had that ear stimulated for almost your whole life? Doesn’t that make a good base for going bilateral, with a second implant on the left?

@Bimodal_user said:

So you were screened for hearing loss as an infant? Or was that revealed later in your life?

No I wasn’t screened. When I was born there was no such test available. I knew when I was 12 I had hearing problems.

@Bimodal_user said:

But you use a hearing aid in your left ear and have had that ear stimulated for almost your whole life?

No not until I was in my 50’s did I get HA’s.

@Bimodal_user said:

Doesn’t that make a good base for going bilateral, with a second implant on the left?

I’ve tossed the possibility around for about 4 years now. There’s still a high risk of not getting a good result, then I would be worse off than I am now.

Just saw on Facebook:

50 years of unilateral deafness, quite a time!

I had 20–21 years of left ear complete deafness (mumps) before CI implantation. Then, I used it for three years, from morning to night. I wasn’t satisfied, despite not expecting more than a bit of word recognition, so I put the sound processor in a drawer. Almost 7 years of disuse.
Then, after @Raudrive’s advice, I started to try isolating my better ear, found Bluetooth accessory for N6 and streaming only to the CI side a lot…

It works now, and has at least WRS 80% (measured in January 2023), and podcast hearing is improving since then…

@Deaf_piper , have you had MRI and CT? That should rule out many congenital ear defects, like vestibulocochlear nerve hypoplasia.

EDIT: more examples: