I'm trying to find someone who experiences hearing the world like I do

Ii think you would benefit from a cochlear implant assessment which is free on NHS.

This would be far more suitable for your circumstances and more informative to your condition.

There is no obligation to proceed if you don't want to.

No doubt Manchester will have a unit to do the job.

I was just thinking, trying to verify a hearing aid fitting for your hearing loss on-ear might be quite difficult as the probe microphone used to measure the output of the aid creates a leakage path for sound that increases the risk of feedback which can result in constant whistling for profound hearing losses because of the amount of gain required. Such fittings can often be verified in a test box after taking a measurement of your ear canal acoustics known as an RECD (abbreviated).

For most profound hearing losses there isn't any venting but for your fitting venting will be required to some degree. The only verification equipment that can simulate venting in the test box is an Audioscan Verifit 2. If you can find a clinic that has one of these it'll make the process easier and a lot more accurate.

In terms of hearing aids, avoid Resound as their frequency lowering technique is near useless. If your audiologist can measure RECDs and get different devices in they can simulate their performance and how the frequency lowering works for your loss in the test box to help narrow down appropriate devices. The University of Purdue Frequency Lowering Fitting Assistants 2can be helpful with this process.

Very similar for me. High pitch, consonants, unheard or miss heard. Can have reasonably good conversations and banter with some people, impossible with others. Happily use subtitles for the telly. When I tell people I’m not reading them, but hearing the dialogue perfectly, they just don’t get it. Not sure how it works, but it must be something to do with constant context or one sense piggybacking on the other. Anyway, I just wanted to ask a question about frequency shifting technology . If I can pay £60 for a bat detector, why do I have to pay 30 times that for the same technology to listen to people .

@higgostar77 said:

I did indeed respond to all frequencies during the audiogram.

My hearing was much worse than yours prior to going bilateral CI. My upper frequencies turned out to be unable to define sound although I could hear painful pops and crackles. This is essentially dead zones that can not assist your brain to understand speech.

Your ability to understand speech better while streaming is helpful information. It proves you should be properly fit with aids and use them long enough to give your brain a chance to learn, might be 6 months or longer.

If you did consider CI most countries that I am aware of expect the patient to wear properly fit aids aids for a predetermined time prior to implants.

I was referred by a Specsavers audiologist who commented that Boots should have referred me.

So it seems that any audiologist could do it but minot want to.

Try your GP who will probably referr your to the NHS clinic, if the waiting list is long then ask Boots or Specsavers if they would cooperate. I was lucky to have one that cared and wouldn't sell me any aids that wouldn't help so there not all sell sell sell.

In fairness, although your loss is a definite referral for CI, the OP’s loss is entirely different and he would be potentially unlikely to meet the CI criteria if he’s got a working hearing-aid solution. (Unless things have changed locally).

The fact that it’s notionally a ‘free’ path in the U.K. shouldn’t really sway the surgical choice either.

If well-fitted hearing aids work for me, then that's great. I've just been trying to understand what the appropriate treatment or assessment is for my particular hearing loss, and how I go about getting it, before potentially spending £5,499 on hearing aids privately.

I did have a private assessment and a short trial on Friday. The audiologist was very honest about the limitations, particularly given the very steep drop between my low and high-frequency hearing. He wasn't sure how much useful improvement in speech understanding could be achieved, although he did discuss frequency shifting as a possible approach.

My loss is some what similar to yours. Also loss since childhood. I don't remember since i was so young. But was basically deaf for three days. (Probable Reason) Exposer to gun fire around age 5. (1980)No hearing protection other than fingers/ parent not making sure i pluggedthem up. Hearing came back. Since I could hear somethings really well it was chaulked up to I need to pay attention more. Crap doctors plus my whole family talked loud so it seemed i could here fine. A lot of your other experiences have occurred to me . Especially hearing speech but not understanding it. I currently have phonak lumity with acrylic eamolds. They work good enough. I still have trouble in cars and group settings. I'll be getting a new hearing test in two weeks. Hopefully no new loss. Will be ordoring ne hearing through the VA. Maybe starkey omega. I would suggest trying different brands if possible. What works for me may not work for you. Good luck. It's a journey.

You wouldn’t normally occlude to that extent with this kind of loss, the risk is that you’ll block/diminish/process the quality out if the ‘good’ portion of the Audiogram.

@Um_bongo said:

You wouldn’t normally occlude to that extent with this kind of loss, the risk is that you’ll block/diminish/process the quality out if the ‘good’ portion of the Audiogram.

Yes, I considered that, remembering post from @Hearing_Potential about 24 kHz sample rate in Phonak HAs. But in practice, I don't perceive that deterioration at all, even when I play semi-professionally with guitar.

And benefits with no vent: more efficient noise reduction and high frequency gain not bothered by feedback threshold are unpararelled.

So if I were you, indeed, I wouldn't propose my setup for patients with good low frequency hearing, espencially when they're inexperienced ones. But after some counselling and when patients like to experiment despite some costs...

@Um_bongo said:

This might not fit with your experience but as I often say on here: ‘Data isn’t the plural of Anecdote’.

Yes. I agree. As a clinician, you must choose the approach that is most likely to be best for a given patient, in accordance with best audiological/medical practice. With my loss this is earpiece with some vent. And making "out of the box" ideas like mine is a bit risky, regarding sound quality, etc.

However, my anecdotal case is real, but that don't undermine what you said and I in the paragraph above.

I even renewed my audiogram ~1 month ago - it's still the same.

@Um_bongo said:

People with very good low frequencies usually dislike ‘any’ occlusion.

What about making deep impression as a default for reaching bony part of ear canal? Are there comfort/retention/space issues so often?

It can help, but once you occlude canal completely your reproduction has to be spot-on and the representation of the directional field too. Bear in mind that most directional systems also roll off low frequencies.

Reasonable and logical.

@Um_bongo said:

Bear in mind that most directional systems also roll off low frequencies.

For what I see from my REOG (and Fortell's with power domes in HearAdvisor testing) - it's hard to roll off frequencies below 250-300 Hz unless I am not taking something important into account.

However, you have definitely more experience with REOGs testing.