New to the HA Community - My Story

I am 38 years old and was just recently diagnosed with moderate to severe hearing loss in my left ear and mild hearing loss in my right ear. I have always been told I had great hearing. That was up until I experienced a sudden hearing loss back in July of 2017.

Back story: My hearing loss happened right after a couple days to a week of people’s voices sounding tinny and robotic. The experience was surreal. I heard a loud crack/pop and then it felt like my middle ear filled with cold fluid, then everything went muffled. All I could hear in the one ear was loud tinnitus and my heart beat. Since I have t-tubes installed my whole life, I instantly turned my head to attempt to drain my middle ear, buy nothing came out. So I gently attempted the valsalva technique, but I couldn’t clear the “blockage” or feeling of fullness in my left ear.

During that exact time in my life I was battling a severe case of advanced Lyme disease and was on a bunch of medication including anti-inflammatory pain pills (tylenol), antibiotics and oral steroids. No matter how many doctors I went to about my ear/deafness, they all said it was likely from the ototoxic nature of the doxycycline I was prescribed over the many months of my Lyme treatment. Nobody could give me a straight answer, but all told me to be patient and that my body was healing, so it could take up to two years for my hearing to come back.

I am a Police Communications Officer and work in a fast paced loud environment over the past 11 years. I do not know if my hearing coincidentally stopped working because of a noise exposure issue at work or if it was because of Lyme disease bacteria, or the extended high dose antibiotic treatments affecting my cochlear.

Fast forward to today and I have an MRI scheduled to rule out acoustic neuroma and other inner ear issues. I also just went for my first hearing aid fitting. They set me up with Oticon OPN-S1 in both ears. Truthfully the cost is what is holding me back because I am currently purchasing a home. So I can not make any large purchases. The bundle cost $5,995 and is way out of budget at the moment, even with my insurance picking up part of the tab.

I wanted to post a more formal introduction, but am not too good at writing about myself. So if you have any questions please do not hesitate to ask. Sorry ahead of time if my thoughts are out of order. I am typing this on my phone.

On a side note, I was looking to see if anyone would be willing to make me a "speech banana " showing my prescription. So I can further explain my recent diagnosis with my wife, children and coworkers. My two most recent audiograms are in my profile.

Thank you ahead of time and nice to meet you all.

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Welcome. I have read about this popping sensation as being fairly common to SSHL experiencers.

How are the hearing aids treating you so far? I am sure folks on here can answer any questions you may come up with. Really friendly folks, and very intelligent / experienced.

Welcome to the forum.

Good luck with that MRI.

If you have a Costco anywhere near you they could save you a bunch of money on really good aids. The Oticons are great aids but there are many other brands of aids that are very good too.

Do a google search for speech banana. You can easily add your audiogram to it. It really is an eye opener to many people.

Good luck

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I do not have HAs yet. They are cost prohibitive at the moment, as I am in the middle of purchasing a home.

Here is what I get for your loss on a speech banana. You should hear most sounds and speech with your right ear. Your left ear, not so much. As was already posted, Costco sells KS9 aids which are basically Phonak Marvel M90 aids, reasonably similar to the Oticons for $1500 a pair. Your situation is complex though and they may not be willing to deal with it. Not sure.

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I do have a Costco locally. I am not a member , but it may make sense to purchase one for this large of an investment.

Thank you for the website tip. I will try that out.

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If you go to Costco and you are unhappy with their services, head back to the original audiologist and talk to them about how you are considering costco because of your current financial limitations but you would prefer them and is there anything they could do to help. There are cheaper options available than the premium tech if you are clear with them about what you can afford.

Sounds aside, let your wife know that she can expect you to do fairly well when she is close and it is quiet. You will likely have a lot more difficulty than she would expect based on your performance in quiet once there is any background noise, or if someone is soft spoken or at a distance, or if you are in a big echoy room. Let her know that things aren’t as clear for you anymore, and this impacts how well you understand quick or accented speech, and how much you will need to rely on visual cues. Let her know that it will be more difficult for you to know where sounds are coming from. Recruit her. Ask her to help you brainstorm ways in which you two can practice good communication habits to support this change. Ask her to share this knowledge to other loved ones to help them communicate with you; if she teaches others, she will better internalize the information herself. Let her know that you may need to grive this loss and ask for her patience and support. Let her know that you understand that this will also be difficult for her, and that you understand that she may find that down the road she also has to grieve. Hopefully you can be open to each other about this. Recognizing that this is going to significantly impact your relationship up front can help you to manage it down the road.

Edit: Let her know that all of these things will still be true if you are wearing hearing aids, even though they may be improved.

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Thank you! Those charts are insane.

My Audi offered a pair of the Oticon OPN-S1 with a 4 year full damage/defect replacement warranty (instead of 3 years) including all maintenance and adjustments necessary. There is only a $400 deductible applied for lost units.

The total OPN-S1 package was quoted at $5,995, then OPN-S2 for $5,295 and lastly the OPN-S3 for $4,695. My medical insurance covers $3,000 of any package as the ENT & Audiologist are both in-network.

The Audi said that if money was the only deciding factor, that I may be able to really enhance my quality of life even with the OPN-S3s. This will be my first HA experience. I can’t explain how good it felt to try them for a little over the hour I was there discussing my different options. My loud tinnitus seemed to disappear when they were in. I was not sent home with a trial pair, that never even got brought up. I just learned about that by reading this forum religiously over the past two weeks.

I think you get a 3 year warranty with Costco. I have their KS8 aids. And there is one free replacement for loss. The hearing test, and all necessary adjustments, free fittings, and wax filters are included in the one up front hearing aid cost. You would have to check if you can make a claim for them with your insurance company though.

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Ok, you trialed in office. Got it. I mean if insurance covers $3K then you’re in business assuming Costco will work with you. For only $60 for the membership it’s worth finding out.

What made you consider aids now after your loss taking place in 2017?

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In regards to why I waited so long.

As crazy as it sounds, each one of the many doctors treating my Lyme disease and all the associated conditions it caused (cardiac related, temporary paralysis, joint problems, etc) almost all told me that my hearing would (probably) come back after the Lyme and medications cycled out of my system. First they said it might take about 9 to 12 months…then that time frame came & went, so they said maybe 12 to 18 months…then the last of the doctors stated if I didn’t get hearing back by the 2 year mark, then I will never get any of it back. Mind you these are all highly reputable primary care physicians, Lyme-literate doctors, cardiologists and rheumatologists that I trusted during the two years they rehabbed me back from being completely bed ridden from advanced Lyme disease. I did not seek an ENT/Audi consult during that time frame because I thought I was in great hands with the team of specialists I was working with.

But hindsight is 20/20. I really wish I went to the ENT/Audi office the day I started experiencing the hearing problems and ear fullness. They would have told me up front that I had actual issues that were not going to subside. I could have also started with HAs and vestibular therapy 2.5 years ago. Instead of that, I have learned to live with my left ear deafness, tinnitus and dizziness. When speaking on 911 calls, I have the ability to amp up the headset speaker 20dB (in 2dB or 6dB increments). My hearing issues have only really caused me an issue recently when I had a head cold that drained into and infected my “good” ear. Then I realized how “deaf” I really was on the left side. I could not hear my wife or children talking and I definitely could not do my job at the police department. It was totally debilitating and scared the heck out of me. That is what started the ball rolling on a proper solution. Again, I know it is crazy, but that is what happened.

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Hi Danny,
Give Gus a call 516-261-9398. He’s located in Massapequa on
Sunrise Hwy near the Mall. The guy is amazingly customer service oriented. Not close to $6000 either. I was a former Costco customer but they are extremely busy and do not give the time needed after the sale. I purchased 3 sets of aids and after the sale it was downhill. I call Gus and can get an appointment in a day or so.

Thank you Neville. Thank you so right.

Have you done rehab for the dizziness? That’s also something worth getting on top of.

Thank you for Gus’s info. I will keep that in mind when I am able to purchase my HAs.

I have no formal vestibular therapy or balance training. I watched several informational videos and have been going at it on my own for over two years. I moonlight in the construction field. So I have been working on ladders and in aerial boom lifts. So I had to work on my balance as much as possible with the one ear. My ENT prescribed vestibular therapy, but I haven’t gone yet.

Yes in office trial for about 90 minutes. I didnt realize the fitting could lead to an at home demo. I would like to try them outside of the Audi noise proofed room.

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Thank you for your kind words and wisdom on the subject.

I mean, if the dizziness is gone then you don’t need it–you’ve already done a good job rehab-ing yourself. But your brain won’t fix what it can’t see and slow movement only improves slow movement. Sometimes you need to find a safe way to do the fast movements to get the last little bit of improvement.

Neville, Would it be more beneficial to do the vestibular therapy now or when I get HAs in lets say 3-6 months from now? I asked the ENT & Audi and they said now is better, because then I will know if it works on me and then can go again when I get the HAs. I don’t want to mess up what balance I have now and then have to readjust in the near future. Sorry if this does not come out in the proper context. I hope it makes sense as written. Thank you for all your insight.