My sudden hearing loss story, and thank you to forum

Hello all, newcomer/lurker here. Last fall, I suffered a sudden and almost total hearing loss in my right ear, and it’s been quite a journey since then. I’ve seen an ENT, two audiologists, and two hearing aid specialists, and am on my second set of hearing aids. I posted the results of the five audiograms I’ve had since last November. I’ve also had an MRI to rule out acoustic neuroma.

I’ve read through much of this forum, and learned so much about all aspects of my problem and possible solutions. I wanted to thank you all for helping me along the way. And I thought I’d share my story in case it might help someone else. Because it’s a bit long and detailed, I’ll use point style to hopefully make it a bit easier to read.

Nov 9, 2021, woke up with near-total hearing loss in right ear. Thought it was maybe ear wax or a sinus infection, thought I’d wait a few days to see if it cleared up. It didn’t, and I called my doctor.

Nov 18, saw GP, she recommended a hearing test.

Nov 23, hearing test with audiologist at Costco. Due to reverse cookie bite mild to severe loss on R side, he recommended follow up with GP for referral to specialist.

Dec 1, saw GP, she had already received audiogram from Costco and sent request for referral to ENT.

Dec 9, appointment with ENT (very quick timing; he made room in his schedule due to pattern and suddenness of hearing loss). As it had been four weeks since the hearing loss, the ENT recommended aggressive treatment with oral steroids PLUS a series of steroid injections in the ear (eek!!!). Treatment started immediately, three injections over the following week plus 11 days of prednisone. He also referred me for an MRI to rule out neuroma. Scheduled for June 26, 2022.

Dec 15, follow up with ENT after treatments, had audiogram done, changes not sufficient to continue steroid treatments. Recommended hearing aids. Said it would be OK to wait until I turned 65 in February as our provincial government pays a good portion of the cost after that age.

Feb 25, at suggestion of ENT, had another audiogram at Costco before ordering hearing aids. Not much different from previous results.

Mar 14, received KS10 hearing aids from Costco. Huge improvement, first time hearing anything in R ear in three months. Also improvement in L ear, though I hadn’t noticed hearing loss there before.

Unfortunately, the improvement in R ear lasted only two to three weeks, then started fading. I returned to Costco several times over the following few weeks, having the HAs checked and adjusted by audiologist and hearing aid specialist, also cleaned and receivers/wires/domes replaced by staff a few times. By early May, R hearing aid was causing more problems, constant reverb, almost no hearing correction at this point. Requested appointment with ENT as I suspected the problem was with my ear, not the aid. ENT asked if I would get another audiogram at Costco in the meantime.

May 2, audiogram at Costco showed drastic drop in WRS in R ear, to 16% from 80% only two months previous. Little to no change in L ear.

May 6, saw ENT. Surprised at the change in R ear, suggested one more injection and a week of oral steriods as a last resort.

May 26, follow up with ENT, had audiogram done. Left ear good, right ear WRS at 28%. He said further steroid treatments would not help, loss in R ear likely permanent, suggested bi cros aids.

June 2, saw audiologist at Costco. They do not supply bi cros hearing aids. Returned the KS10 hearing aids for full refund. Researched the different brands of bi cros aids and liked the features and quality of the Phonak cros system. I found a local private clinic that carried these.

June 6, saw hearing aid specialist at the private clinic. No new audiogram done as I gave her copies of previous ones. She suggested the rechargeable Phonak system, CROS in the right ear and P90 in the left, with a 90 day trial/return period.

June 14, received my new hearing aids. Spent about 90 minutes with the HAS explaining, demonstrating, fitting, programming. Was thrilled to hear voices and sounds originating on my right side, even though the sound actually came into my left ear.

Not much adjustment period or learning curve as I had worn the KS10s for over two months. But I’m still getting used to the “directional” issue, hearing the sound in my left ear when it is coming through the CROS on the right. I find this more of a curiosity than a problem, and I’m sure I’ll get used to it. I’m just so happy to be able to hear sounds from all directions again.

Also happy with the P90 on the left (pretty much the same as the KS10). Clear sound, understand voices, TV mostly good. At our follow-up appointment, the HAS showed me on her computer where the built-in programs had kicked in automatically over the previous two weeks. I never notice them switch around, my only problem is with voices in a very noisy and crowded room. I will address this with her at our next follow up.

The big downside with the bi cros system, as others have mentioned, is the short rechargeable battery life. One day when I had social engagements throughout the day, with many people and much noise and talking, I got the “10 minute” warning after only 9.5 hours. The HAS explained that when the automatic programs kick in (speech enhancer, noise cancelling, etc.)—which they would have a lot that day—they use up more battery power. Also of course the cros is streaming constantly.

I have paired to Bluetooth but mostly turn it off to conserve battery time. I don’t use the phone much so just use it the old fashioned way, without Bluetoothing through my hearing aids. I’m also happy to listen to music and TV direct from source, without Bluetooth. This seems to make a difference, so the batteries generally get me through to bedtime. I usually re-charge for a half hour or so in the middle of the day.

All in all, not a fun journey, but I am so grateful for the medical assistance, testing, specialists, and especially the hearing aid technology available to me. I am also grateful for this forum. I found it early on and have learned so much from all of you. I would be more than happy to answer any questions, and of course to receive any tips or suggestions.

I should also mention I’ve had tinnitus in my right ear for over 15 years. Before I retired three years ago, I was an editor, spending many hours each day reading on paper and on the computer. Also too many long meetings and a lot of stress and pressure, all of which made the tinnitus worse.

At times over the last few months of hearing loss, the tinnitus got much worse, both with and without the Costco hearing aids in. However, since I’ve been wearing the bi cros, the ringing, although constant, has been faint and almost unnoticeable. I have no idea why, possibly less stress as this whole issue has been resolved as best it can.

Summary of my audiograms

11/23/2021 With Costco. Left: sloping normal to severe loss, WRS 96% Right: reverse cookie bite, mild to severe loss, WRS 80%

12/15/2021 With ENT following steroid treatments. Similar pattern; slight improvement in WRS: L 100%, R 96%

2/25/2022 With Costco at request of ENT, before ordering hearing aids. Similar pattern; slight loss in WRS: L 96%, R 80%

5/2/2022 With Costco, prior to appt with ENT, due to further hearing loss in R ear. Almost no change in L ear. Slight drop in hearing on the R (“reverse cookie bite” pattern levelled out), but large drop in WRS, from 80% to 16%

5/26/2022 With ENT to double check/confirm Costco results. WRS on right shows at 28%, otherwise pretty much the same as Costco. Recommends bi cros aids.

PS, I had the MRI on June 26. From my layperson’s reading of the report, all is well. (“The cerebellopontine angles and internal auditory canals appear unremarkable.”) I have an appointment with the ENT next week to review the report. The MRI was mercifully SO MUCH easier than I thought it would be. I’d been told it could take 45 to 60 minutes, but it was over in only 15. I’ve never had an issue with claustrophobia but I veer near the edge of it at times. I closed my eyes before I was moved into the machine and didn’t open them until I was moved out again. This may have been more difficult if I was in there longer. I was also nervous about the noise, but it wasn’t an issue at all because of the excellent ear plugs provided. I could certainly hear the noise, but I was expecting it and it was very muffled.

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Did anyone talk to you about a cochlear implant candidacy assessment? If you think you might EVER get an implant, you need to be aiding that right ear.

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I might get a second opinion from another ENT. Your ENT hasn’t diagnosed the problem but immediately started off with steroid shots in the ear. No one denied you have a hearing loss but a sudden loss like yours literally overnight seems to me at least to require further investigation

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Eh, MRI rules out a lot. Most doctors would stop there. Sudden loss tends to be attributed to a viral infection once the MRI comes back clear. Rarely, it could be autoimmune but steroids are still the treatment.

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Still might get a second opinion . Steroid treatment was initiated prior to mri

Thank you Neville and Hass. The ENT did say from the beginning that I experienced SSHL. He said the cause is not known but the best guess in the field is a virus, perhaps even one that has been dormant in the body for some time. He seems to have a strong interest and experience with this condition. Sorry I didn’t include this in my original post. It was already so long, I was more focused on lowering the word count than adding to it. :slight_smile:

I understood that SSHL “was” the diagnosis, with steroid treatment being the best treatment of choice. The ENT was a bit unhappy, I believe, that my GP hadn’t started me on oral steroids right away, since I first saw her four weeks earlier.

Once he determined the steroid treatments would not help, my ENT did say another option for me would be a cochlear implant. He actually spoke quite positively about this. He said it’s unfortunate our province (Alberta) does not support CI without total deafness in both ears. He also said his profession has been lobbying the government on this, to no avail so far.

I can’t afford to pay for a cochlear implant on my own, especially as I understand the ongoing costs over the years are quite expensive as well. Also, being very new to hearing loss, this seems an extreme measure to me, since my left side hearing is still sufficient and I’m appreciating the benefits of the cros. Of course, I’m going on blind faith and naivity that this will not change.

Hass, I appreciate the suggestion of seeing another ENT. I had that thought a couple of times, as a second opinion more than anything. I admit I’ve gotten a bit worn down by this process, and do wonder if I’m settling for a lesser solution than I need to.

Thanks again, both of you. I truly appreciate your input.

@Lyndsie

Would you get the disposables CROS P so you get better battery life and can actually use Bluetooth?

Seems silly to not use Bluetooth etc just because of battery.

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I agree, to a degree. It does seem silly to have these features and not use them. But I honestly don’t miss Bluetooth when it’s turned off. Rarely use it to stream music, never for TV. It was kind of fun to use for phone calls, but not necessary.

I will be asking my HAS to see the other style at our next follow up, to get a better picture of pros and cons.

Good, I’m glad they spoke to you about it. Ontario has JUST started implanting unilateral losses, and only intermittently in adults.

So… If you thought you might get an implant down the line, one option would be to pick up an entry level tech hearing aid for that ear and wear it for a few hours a day to keep the nervr active. It requires considerable motivation though, when the residual hearing is so distorted. I only know one person who does this and they anticipate implantation within the next few years.

The other thing you might want to talk to your clinician about is a Roger on mic. CROS system helps to give back access to your bad side, but noisier environments are frequently still a struggle when you have unilateral loss and a Roger mic could help there. It does drain the battery too, however. I do usually go with the 13 battery for the phonak CROS to get through full days, but you’re right that rechargeable have a convenience factor that can be really valuable, so if that’s worth managing your battery life a bit more closely, that’s fine. The Roger mic is always something that can be added down the line if you frequently find yourself in difficult listening situations.

Don’t worry too much about the late steroids. It’s true standard practice is steroids ASAP, but it’s honestly a bit of a Hail Mary. We don’t have clear evidence that it is actually helping people. Some ~50% of people recover hearing after a sudden loss on their own, and if that happens it usually happens early. So when we see that steroids only help when used early, it’s hard to disentangle whether they are actually helping or whether we’re just looking at the people who would have recovered anyway.

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Thank you, Neville. This is very interesting and helpful information.

Fortunately I have follow up appointments with both my ENT and my HAS in the next couple of weeks. I will raise these issues with each of them respectively.

I guess one thing going for me is I’m happily retired and live a fairly quiet life (in every sense of the word). It’s not often I’m in a crowded, noisy environment. I’m so glad this didn’t happen while I was still working.

I also need to remind myself I didn’t go looking for hearing aids so I could answer the phone remotely, or stream music straight into my ears. I needed help hearing better, and these gadgets certainly help with that. :sun_with_face:

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My sudden hearing loss in one ear only was following a plane journey. I ignored it for a few years but decided my one sided hearing was a safety issues eg crossing a road I would not react correctly to vehicle noise from my deaf side and when driving I found it hard to locate sound of an approaching amulance siren. I was referred to ENT who did MRI and put me on longcourse of antibiotics to no avail. The inner ear was congested due to blockage of the eustacian tube. Surgery to clear out debris and insert a gromut in ear drum was done and hearing was restored for about 2 yrs. Back to the surgeon and this time a CAT scan and another surgery. Hearing failed again in couple of years and back to surgeon who this time said I would be good candidate for a hearing aid and that the level of hearing loss should not deteriorate further. After another unsuccessful antibiotic course I decided to go for a hearing aid and have been happy with one since. But recently I had dizzy spells and pain in that ear so I am returning to ENT chap to see about perhaps another grommut as the last surgery was over 10 yrs ago. It has been a bad year for air travel for me ( 22 flights in 9 months) and that is perhaps upset the inner ear?

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I too suffer from bouts of vertigo. One time in particular was severe. My Dr feels it’s seasonal, maybe allergy related. He prescribed antivert. It seems to help

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Geez Lyndsie,
You have my utmost empathy here. Very detailed report helps give folks here some foundation for your issue. Is there any chance you could’ve had a stroke that affected the right ear so instantaneously? Or would the MRI have found that out?

I will often have a change in hearing in one ear due to atmospheric pressure (high, low, rain, etc.,) but nothing as dramatic as you’ve had. It’s so critical to keep the word comprehension UP in that right ear - via some mechanism that transmits the sound from good ear to bad.

I hope there are further discoveries and resolution to this SSHL, and that you keep us informed. Neville’s suggestion of a Roger device seems excellent. I’m also looking in to that for better speech in LOUD noise conditions. It’s the HOLY GRAIL among us all.

Best of luck to you in the journey for answers.

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Wow, annieoburns1, you have had a much longer and more difficult time with this than I have. I am fortunate to have had a clear MRI, no blocked tube, and no vertigo. Still adjusting to the bi cros hearing aids, but otherwise feeling more optimistic than I have for months.

Best of luck with your upcoming ENT visit and treatments!

I appreciate your kind words, 1Bluejay. It’s been a challenging time but I’m on the upswing, thanks to good medical and other support. It also doesn’t hurt that I’m an incurable optimist by nature! :sun_with_face:

I believe the MRI would have shown evidence of a stroke. The only thing the ENT mentioned looking for was the acoustic neuroma. And happily, today he confirmed that the MRI was indeed all clear.

I’m meeting with my hearing aid specialist later this month and will definitely ask her about the Rogers device. Combined with the Phonak bi cros system, this sounds like something that would pretty much resolve the issues I’m finding the most difficult to deal with.

Thank you again for your thoughts and good wishes.

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Thank you Lyndsie! The dizzy spells went after about 4 days and another couple of days the sporadic pain in ear stopped also. But as it takes ages to get appointment with ENT etc I think best to follow up and get advice. I would hate to be on pain meds for something that has a mechanical fix. I still get the odd ‘jag’ of pain just to remind me it needs attention.

All to do with balance and the importance of two working ears for same not just for hearing! It is like having both eyes working together = 3D vision. I have one long and one short so I only appreciate a lovely landscape when wearing glasses.

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Thank you Lyndsie. Your very detailed report and chronology is very helpful as I am in the middle of dealing with my sudden hearing loss in my right ear. In my case I experienced the first loss in early April of 2022 by the time I visited an ENT I had regained almost all hearing in that ear, however the loss reoccurred in late May. I returned to the ENT within 2 weeks and was placed on steroids for two weeks. On my return visit my WRS dropped from 64 to 52 so no improvement. I have an MRI next week but an not optimistic it will reveal much since I am unable to use contrast dye with the MRI. I am already using hearing aids since I have some hearing loss in my left ear from my time in the army. I am not very confident in my ENT’s diagnosis, he seems to suffering from patient fatigue and could probably benefit from a change in profession. My question to you and annieoburns1. How is blockage of the eustachian tube distinguished from other causes. I had no other diagnostic tests other than the audiological evaluation. Also what level of loss requires bi cros hearing aids rather than the standard ones.
Thanks again.

Hi cyb4, my sympathy for your troubles, certainly not a fun time.

I did not get contrast dye with my MRI. I don’t know if this is due to different machines being used, or depends on what they’re looking for, so perhaps there’s a chance yours will be fine without it, too?

As for the cros hearing aid system, my experience is very limited and personal, but my ENT recommended this only after my WRS dropped to 28%. He said no regular hearing aid would help when it was that low. This is a good question, though, and I hope some of the experts on the forum are able to answer it for you better than I can.

As Neville mentioned it’s important to keep the nerve in the SSHL ear stimulated. Especially if you have plans for a CI in that ear somewhere in your future…

I had an SSHL 8 years ago. I kept wearing my HA in that ear all the time, not that I could hear much with it… When I spoke to my surgeon about continuing or not to wear it, he said don’t stop wearing it whatever you do. It will help in speech recognition quicker after getting a CI.

So I kept wearing it for a further 5 yrs, even though after the SSHL it was mostly useless to speech recognition. After my CI surgery I was for ever grateful for that single piece of advice… Simply because upon activation of CI I could understand some words through my CI. Full speech recognition followed quickly after that. Within 1 week I was hearing all speech quiet clearly.

Good luck on your hearing journey.

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Wow,You have had quite a journey and I wish You better Health.I too lost my R Hearing last February and have Tinnitus.After several Bad Visits to a ENT Group which only reccomended a Prednisone shot into my eardrums after being on it orally for 20 days I took the bull by the horns myself and purchased Signia Charge and Go Hearing Ais on Ebay for cheap,programmed them myself via iPhone App and its a wonderful life besides some tinnitus as they have this setting.I just bought again on ebay new in the box Beltone Imagine with Charger for $86.00,these run $3600.00 each and are the latest technology.I fint that the Receiver is the problem in alot of cases,they must have the proper Power,Beltone has the new M&RIE with more Microphones.I can afford the best hearing aids but feel they are super over priced and theres only a handful of manufacturers.Good Luck!

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