Very frustrated and sad

You lot are probably thinking we all going through the same thing and yes, we are! But I have nowhere else to post, because I do not know anybody who is going through similar to what I am.

I managed to acquire all of my medical history from the Audiology because I have an upcoming appointment for a cochlear assessment. Since I was 5 years old, I had nothing but problems with my ears. Grommets put in, a myringoctomy (cut eardrum to release fluids), producing dark discharges out of both ears daily, speech therapy because I sounded very “nasally” and was not understanding both verbal or written languages, I apparently had a normal after surgery (was deaf in one ear before that) but they left me to my own devices for 8 years, despite letters from teacher of the deaf and the council in between those years, sending them letters (I counted 8 letters) that I am still unable to talk properly, behaving badly at school and cannot listen or follow instructions so maybe I was still deaf. Speech Therapist refused to help unless they sort my hearing out first, so I never even bothered getting the full course. That would have definitely enabled me to speak properly.

If I had been aided when I was younger I wonder whether outcome would have been different for me. As I said previously I still cannot pronounce any HF words, let alone hear them and hearing aids are not even helping any more, pointless getting them adjusted all the time because it does not do anything. I really want to give them up because they are not even helping but I cannot because if they find that I have then I most likely will not be eligible for an assessment. I had 4 audiograms done and the slopes between them all have gradually got steeper as time has gone on so no doubt it will continue to get worse.

Sorry just my rant for the morning! I know I said I refused to wear my hearing aids for YEARS, and clearly stated on the letter from Teacher of the Deaf I am refusing because I was getting bullied and picked on (which they did nothing about). There was no deaf units where I lived so was unable to attend to one. People probably think this is not a big deal but it is a massive deal. It affects our confidence, our future and career prospects, as it did mine.

I am literally so fed up of hearing sounds that are too loud and nothing is clear enough for me to understand. We had people over at the weekend and my head was pounding, that was after 1 day. The exhaustion of TRYING to hear what people was saying.

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@craftycrocheter said:

because I was getting bullied and picked on (which they did nothing about). There was no deaf units where I lived so was unable to attend to one.

Exactly this

I didn’t wear mine for 3 years for this very reason.

Monmouthshire

@Zebras

Yes! All they did was make us sit right at the front and you have an assistant sitting with you at all times, talk about making you stick out like a sore thumb! She was the one who carried my hearing aids until end of school day and would physically make me put them in in front of the whole class. She was not the nicest!

They also made me sit in front but they did increase my Teacher of the Deaf visits to 3 times a week.

I read children now will maybe see their TOD once a term so I’m shocked I saw mine 3 times a week.

I left secondary school in 2005 so it wasn’t very long time ago but wasn’t recently either.

Monmouthshire

I left in 2009 so not too far from you! @Zebras

Sorry I am not diverting the topic of conversation but been reading my reports again and it says that I have recruitment in both ears. No idea what that means so as usual, consulted Google and read this Recruitment from Hearing Loss Explained32

It honestly explains everything I have! I wear hearing aids and can hear high frequency sounds like washing machine, microwave, birds etc but voices and everything else is amplified and has no meaning to it ie still garbled and makes no sense.

Recruitment is what my friend has.

She manages well with despite being profoundly deaf. Only manages well due to very carefully programmed HAs. Before they were programmed well, she didn’t manage well with her recruitment.

Were you told about your diagnosis of recruitment?

I wasn’t told about a diagnosis (due to a severe accident) in 2015 that I’m currently going through PALS regarding this. Seems common to not tell you things, I’ve found with the NHS.

Monmouthshire

Nope did they hell. I only just found out now that I have recruitment and that was diagnosed in 2008 according to the records. Is it worth mentioning this to the audiologist when I go for my appt next month? I do remember constantly complaining that they are far too loud.

I would definitely mention as there maybe someone experienced enough in Recruitment to program your to at least help until they decide if best.

Maybe a strongly worded email stating you were never told and can your HAs be programmed to help?

tim_s64

Nov 1, 2023

Very sad to hear your story! The longer I live 72 now, the more I am struck by the ignorance and cruelty to be found in this world! The magic key to unlock the best that this life has to offer is research and more research whether it be audiologists, specialist ents, hearing aids etc etc. That is the only advice I can offer you but I wish you every success in trying to mitigate your problems!

Monmouthshire

Nov 1, 2023Edited

In reply to @Zebras

I will send an email or maybe wait as my appointment is only 2 weeks away. I still doubt they would be able to help me to be honest. That is why she referred me for a assessment. I had to keep going back to get my hearing aids readjusted as I am not hearing enough clarity and ahe said there is literally nothing more they can do. SoundRecover is activated, but she said even my middle frequencies are not great. I kind of brought up about purchasing about better hearing aids then, and she said I have the best top of the range ones and no other brands will make me hear any clearer so I should not bother wasting my money.

She said if I do not want CI then all I have is 2 options to try, one to drill a larger hole in the vent to reduce occlusion (as that is my complaint) but it means I will not hear as much in the high frequency range because I will get feedback), or completely close it up so I will get even more gain in the high frequency but it will cause very bad occlusion… which I really do not want). She actually said I am the most difficult patient to ever try and treat with my hearing loss. Must be fed up of me lol.

DaveL

Canada (Toronto) YYZ

Nov 1, 2023

@craftycrocheter

My hearing is better than yours. My story isn’t important. But just in case it helps…

I’ve worn ’s for about 20 years.
The hearing aids I have now are 2 years old. They were never set up right. My audi was a gentleman. Every time I told him my case he would give me a reason why they were good, and that’s as good as they get. I saw him >10 times. Finally he called me in late in the day and fired me. He politely said that I should find someone who could help me more than he could. He also erased all the programs on them. And he used an that shows my hearing had improved. He should patent the method!

I blamed the hearing aids for those 2 years. I also said regularly that I think there’s something simple that we’ve missed. He used . I had 5 hearing tests including the last one with the improvement.

Ok…I found a hearing aid practitioner.
He took me on.
Used the same audiogram.
Used Phonak’s Target quick fit.
Boosted mids and high frequency a little bit
Set volume at 105%

I went home. I could hear!

Don’t know why the quick fit works for me.
Don’t know if REM would help.

He’s skilled. Worked for Sonova before in manufacturing. It’s magic.

So – offering hope. Maybe you need skilled eyes to look at your circumstance. Frankly I was overwhelmed before. I’m happy now. They ain’t perfect. I’m old.

(Yesterday I commented in a conversation. I hadn’t heard right. I got the “you’re crazy look”. Well, I used to get that a lot. I accept it. Oh well.)

Good book…helped me a lot.

HEAR & BEYONE
Live Skillfullly with Hearing Loss

Shari Eberts
Gael Hannan

I’m so happy someone recommended the book here. It has changed my life. I have the print version, and the eversion too.

DaveL
Toronto

In reply to @craftycrocheter

Monmouthshire

Nov 3, 2023

Hi @DaveL

That is sad that your previous audiologist gave up on you like that. Glad you have one now that works with you, not against! I do not get the option unless I pay for private hearing aids unfortunately. I even went as far as 10 miles out to another department and the audiologist I usually have, was there as well! I have had the same one throughout ever since I have been fitted for the first time.

She is lovely and I know she has tried her best. But it is what it is. I am going against having (if they say I am eligible). I have thought so much about it and I just do not want to lose my remaining hearing or go through surgery. I have lived without clarity for years and years, and I am still unsocial/introverted to this day so, I kind of give up ever being able to hear clear speech again

Doggit

Spain

Nov 3, 2023

I am really sorry to read your story. I hope you find a tiny bit of comfort fro sharing your experience here with others who understand. I know I did.

I just want to mention that your comment about feedback is not necessarily true. I have high frequency loss and used an occluding power dome with my first which was the opposite fo what I should have, but having tried about a dozen domes, it was the one that amplified most and feedback was rarely an issue. Now I have a Phonak Paradise 90, with a custom mold, and I don’t get feedback at all.

I think the NHS maybe have too much work to dedicate a lot of time to difficult customers. Although the whole process is exhausting, could you try visiting several HA shops and get free trials. That’s what I did and many others alike. Eventually got my HA from Costco at half the price of the shops (650€). (here in Spain they are not included in the health service unfortunately).

Good luck.

3dslides

Nov 7, 2023

Being able to hear decently, like the ability to see decently, is really priceless. But you know that! You experience the ill effects of poor hearing. Recruitment in the hearing loss is a horrible situation to be saddled with.

I am reminded of the Bible story of the woman with a bleeding problem (Luke 8:43) who, over the course of twelve years, spent all that she had in search of a solution. I guess if I were in your shoes, I would spend any money… I’d even beg from relatives… and use the money to hire other audiologists’ services and/or trial other hearing aids from different places, hoping to hit one who could more effectively treat the recruitment.

There’s no way to change the past. The best you can do is aspire to change the future. It’s worth the try, anyway. I hope you can find the inner fortitude and the financial means to keep trying and to maintain some sense of hopefulness.

In the meantime, for those conversation attempts which are so maddeningly loud and muddled, how about coaxing the folks to converse via phone texts or computer emails, or on paper pads? I know it seems strange to communicate that way with someone who sits right beside you, but if they care about you enough to want to communicate, they probably are willing to make a little extra effort to produce effective communication (and to avoid causing you pain) if they are made aware of the depth of your situation.