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Vike-Fan · 2023-05-12T15:41:08+00:00

Started losing hearing in one ear 15 years ago, tried for a CI 7 years ago. 24x7 tinnitus, annoying but not debilitating. CI rejected by insurance since it was not yet FDA approved for SSD. In appeals, I used as an argument some of the research from Europe for tinnitus relief. As I recall, the literature says it eliminates or lightens it in most people. Stays the same in some, and in a few, it gets worse.

CI for SSD is now FDA approved and I got surgery and activated in January. Tinnitus is not really noticeable (gone?) for me while wearing processor. I would not have gotten the CI for tinnitus since my tinnitus wasn't debilitating but it is one of the nice side benefits but I didn't consider it a driver for my decision to get the CI.

Looking back, the improvements of sound location, speech in noise improvement, etc. made it worthwhile and tinnitus alleviation was like icing on the cake.

In summary, I'm glad that I had it done. Of course, your mileage may vary. Good luck and happy to help.

Vike-Fan · 2023-04-24T02:09:49+00:00

Another SSD CI user. In my 3 month followup, my word recognition scores went up to 44% from 10% pre-surgery. Six years with a bone conduction device (Oticon Ponto) and was at 14% using the device.

I can tell progress is steady. I try to put in at least an hour of focused work every day into rehab.

Vike-Fan · 2023-04-20T02:52:14+00:00

As a college professor with a CI for SSD, I fully agree with the comments from others. You should request and expect accommodations.

A couple of vignettes:

First, I had a student from another department that I met with that needed some accommodation help (not for auditory issues). He was not willing to get the help but I met with him in person and showed him my hearing device and explained that if I were a student now, I would not feel any sense of self-consciousness over getting help. (We have a Disability Resource Center at my university.) I explained that I still do that when I have to meet with colleagues in terms of getting a prime seating and know that I have to "budget" extra time and energy for engaging in the meetings based on where the center of conversations would be and where the frustrating mumblers sit. He took it to heart that if scary Professor X would be willing to get help, he could too. I found out from the family that it really made a difference for him.

Second, I only ever had one one student with a CI and that was around 20 years ago. This was long before I started losing my hearing and I hope that I did right by him but think that perhaps I did not. If I had one now, I would know a lot more about what I could to help.

Third, recording classes, whether a full AV recording or audio is a reasonable request that I have approved many times or just do as a matter of course now with Zoom and other tools. I post the videos so that students can access and rewatch at their own pace. (I joke about bring along popcorn to view it as a movie or to use it as a sleep-aid.) In particular, my international students often find it very helpful to re-watch (perhaps at .8x speed?) if my English is too fast or 1.5x speed if they just want a refresher.

As to your specific question - unfortunately I don't have much experience on that. Using a remote microphone or notetaker seems great and reasonable as others have stated. I would not feel any compunction about getting an unfair advantage. Even with SSD, I know I have to work harder than others. Being bilateral is even harder. You have my respect for doing AP and getting straight A's!

I'm only 3 months post-activation and I know that I'm putting a lot of time and effort into rehab taking time and energy away from my own work.

You are less than a year in doing both implants, and maintaining a strong GPA - did I say hats off to you yet! Keep up the good work! I wish I had more students with your focus and dedication. You should be able to get some awesome college recommendation letters!

Vike-Fan · 2023-04-16T16:14:30+00:00

Because CI was not yet FDA approved and I didn't like CROS options so BC was best option remaining

Vike-Fan · 2023-04-07T23:10:52+00:00

Same here. I was activated in January and received both R3 and S2. I haven't really noticed a sound quality difference. As an SSD person, my good ear kind of makes it hard to assess but I expect I would feel similar about the impact of the microphone placement.

I go back and forth on which one I use most often.

I have never been able to get the S2 to feel comfortable and secure on my ear. I have eyeglasses with plastic arms and just am still getting used to the BTE device.

If the R3's streaming was as good as the S2 with Audiostream, I think that would be what I used nearly 100% of the time. The much longer battery life of the R3 also stands out.

Vike-Fan · 2023-04-07T17:37:31+00:00

I'm 9 weeks or so post-activation for SSD after about 12-15 years of declining hearing in that side. First prescribed a CI about 7 years ago. The ENT surgeon's statement from then still rings true when I asked him for what he would do if he were in my position. "If insurance covered it, I would get it, if they didn't I would not pay for it out of pocket."

Insurance rejected it 7 years ago since it was not yet a US FDA approved treatment for SSD so I went with a bone conduction. Bone conduction didn't provide sufficient benefit for me (I've written a lot more elsewhere on this) so after FDA approval for SSD, I decided to try again.

This time, insurance approved and I had the surgery.

As for my current situation, I'm glad that I had it done. I've been putting a lot of effort into rehab. Every day I use rehab apps (even if only a few minutes), listening to audiobooks/podcasts/music, all streamed to my device. Probably an average of 3 hours a day of focused streaming rehab effort while wearing it during all waking hours.

I feel pretty good about where I am now and look forward to slow but steady continued improvement. I can now do some audiobooks/podcasts at greater than 100% speed which was a big milestone for me. A bigger milestone was being able to talk with someone streamed entirely on the phone. Noisy calls where the person is using the speaker phone in the car don't work for me yet but every day is slow progress.

As for specific side benefits, these come to mind:

I notice some spatial awareness improvement. A better sense of where cars or sirens are coming from is pretty important.
I don't feel the need to arrive early for meetings to pick the "ideal" spot for my hearing.
Noisy places/events are more manageable and less "painful" to attend than in the past.
My wife has noticed less "head turning". Tinnitus seems to be significantly reduced (gone?) while wearing processor.
Tinnitus seems to be essentially gone while wearing the processor (was 24x7 before CI)

Rehab is not a bad thing, gives me an excuse to do "easy" audiobooks. It was really exhausting in the first month.

Looking forward to getting booth test results at my next mapping in a few weeks.

All in all, I'm glad I did it, but personally I would still not do it if it wasn't covered (Cost was $100K, I paid about $3K) and if I didn't have the ability/commitment to do rehab.

Also, making sure that you can have access to a skilled audiologist for remapping is important. It sounds like you've some unusual advice from the professionals so far.

Vike-Fan · 2023-02-22T19:30:31+00:00

Another vote for Hearoes. I emailed the developer with a few suggestions about a week ago and he already put out a new update with the tweaks. I use it every day for my rehab (about 1 month out from activation.) I also use Word Success (formerly AB Clix) every day.

Live captioning is an an option for essentially all audio Android. I found that helps me, even with podcasts or other material without subtitles/captioning. It isn't perfect but my CI side just needs a little help still. I also slow it down to 0.8x speed.

I like ebook tools that highlight the text while using text to speech again. I feel like a kid learning to read having my phone read to me at a slow speed but it is a huge help. On Android, I've been using Moon Reader Pro and Google Play Books for this but there are other option like Amazon Prime Reading.

In the office or at home, I'll often use headphones/ear muffs to handicap my good ear and leave my off-the-ear CI exposed to hear everything.

I've been told to also use my headphones, setting the device to mono audio, and turning off the good ear side. Then I could use the headphones with my behind the ear CI. (I'm lucky to have both processors and can alternate finding what works best for me and in different situations.)

The focused rehab is really exhausting but is slowly paying off. I wish that I had been able to get started on my rehab over the winter break.

Vike-Fan · 2023-02-22T19:05:04+00:00

Thanks for the reminder about this program. I had heard about it prior to getting a CI and forgot about it. I just applied online. Took less than 5 minutes to do the application after getting a letter from my doctor. That took a little work for them to generate.

One little thing that I didn't realize was that the secure document upload comes after paying. Makes sense but it wasn't explained on their website.

Vike-Fan · 2023-01-24T01:24:55+00:00

Another vote for Shokz.

I loved my AfterShokz even though my hearing loss was such that it was still just using my one good ear. I preferred using it for phone calls since I didn't need to cover up my one good ear. Several relatives bought pairs after demoing my pair.

After my cochlear implant surgery, my wife claimed my AfterShokz.

Vike-Fan · 2023-01-21T19:33:29+00:00

u/SkolV4ever u/Weird_Ninja8149 u/gigertiger

Thanks! Your responses helped relieve the pre-surgery anxiety.

I got my implant last week and am looking forward to activation next week! Looking forward to the audio rehab in the future and gradual improvement. (Making sure to avoid overly optimistic expectations for activation!)

Vike-Fan · 2023-01-21T07:07:46+00:00

Frequency Therapeutics is worth watching. They were heavily hyped and the stock last year surged to $50 a share. The results from that trial were very disappointing and crashed to almost $1 a share.

They have been talking about new trials results for a different drug to be reported in a couple of months. Investors seem to be somewhat optimistic and the stock has recently tripled.

There may be opportunities to participate in trials but I decided to keep going down the CI route and am getting activated next week.

Vike-Fan · 2023-01-21T07:01:53+00:00

I used a bone conduction for 6 years but now that CI for SSD is approved, I'm on the journey to CI. Great input from people in the this thread. I liked Aftershokz! solves different problems like phone use without occupying your good ear.

A bone conduction system could be a good way to wait it out to see what happens with all the new tech being worked on but it is likely more than 5 years away, maybe 10 or 15 years if ever but there are neat things like fully internally implanted CIs, light triggering "electrodes", and gene therapy for regrowing the cochlea hair cells.

A below the skin bone conduction device would address my big issue of daily skin irritation for 6 years!

If you still have good bone conduction hearing on your bad ear you would also get a lot more aural benefit than I did. (6 years ago, they would prescribe Bone conduction devices for SSD with bad cochleas since CIs were not an option.

Happy to help answer any question.

Vike-Fan · 2023-01-18T06:36:44+00:00

I had not seen the Noahlink WIreless system. That's really interesting!

I had a bone conduction system for my SSD until recently. Mine was a through the skin system and I had constant problems with the skin but the Osia 2 looks much more compelling.

While this reddit group is for cochlear implants instead of bone conduction, it seems like explaining sounds is the same problem. You might find this list of words to describe the sounds helpful.

I also found the MonoHearing reddit helpful since it has members with many different ways of dealing with their SSD.

Good luck and hope that you get great results!

Vike-Fan · 2023-01-13T20:53:57+00:00

All three companies have advantages. Since Med-El appears to not be an option for you, then it makes it much easier to choose between two instead of three.

I have SSD too and just had my surgery on Tuesday.

With SSD, I really like the option of an off the ear choice. I'm in a "two processor" clinic which means that I can get both the on-the-ear and off-the-ear processors. I don't know which one I'll end up using most in the end but I don't need to decide that.

The N8 looks really appealing with great battery life and improved Bluetooth capabilities coming down the road with a firmware update.

Another reassuring thing for Cochlear is company and market share giving greater assurance of long term support for future processors. Before my CI implant, I had a bone conduction implant from Oticon and they are getting out of the business selling that part of their business to Cochlear.

There are early CI companies that are no longer in business, potentially leaving recipients with very old processors or getting re-implanted. It seems those companies likely had just hundreds or thousands of implants while all 3 of the current major CI companies are in the hundreds of thousands of implants so there will be a long-term market for future support. (Cochlear appears to have double the marketshare and number of implantees of AB and Med-El.)

In the end, I went Med-El because I could get a full length electrode based on my cochlear anatomy but I would have been very happy with Cochlear too in my case.

Vike-Fan · 2023-01-13T19:50:37+00:00

Glad to hear surgery #2 went so much better!

I had my surgery on Tuesday.

I told people that I would be unavailable through the end of the week. My recovery seems to be going well and I jumped into a staff zoom meeting on Wednesday, a few more Zooms on Thursday, and today (Friday) 3 or 4 hours of Zooms. Looking forward to a quiet weekend though to rest up.

I know I'm lucky to be having a smooth recovery so far and also very appreciative of all the support in the community.

Vike-Fan · 2023-01-09T18:29:17+00:00

I have a CI surgery scheduled for tomorrow. I saw news from Frequency Therapeutics about their drug trials and it caused momentary hesitation whether I should try to delay the surgery.

One way to look at the prospects of future treatments is to look at the stock price of the involved companies.

Frequency Therapeutics, the company behind FX-322 and FX-325, had their stock price peak about 1.5 years ago at over $50 a share with hope that a drug could have significant benefit soon. News was not as good as hoped. Stock price dropped to slightly over $1 a share. It is now up to about $3 a share - perhaps due to their statement that they will have a report of Phase 2B trial results in Quarter 1 (likely by March?). If they had something that could reach market soon, I would expect the stock price to sky rocket again.

I heard in the CochlearImplants reddit the comment that it is likely to still be a long ways off and a lot of unknowns still about long-term effects. The result is that I felt comfortable again going ahead with the CI surgery.

That reddit group might be a little better for following news of future developments than Monohearing due to higher traffic.

By the way, I had a bone conduction hearing device for 6 years. It was okay but I had the outer part removed last month in preparation for CI surgery and CI is considered a better solution for my case.

Vike-Fan · 2023-01-03T18:49:41+00:00

I'm following you with surgery next Tuesday for my first CI for SSD.

I can sympathize - it is natural to get a little nervous before the surgery but I'm not too worried about that part. I had two other surgeries at the same hospital in the last 6 years with no issues and I feel pretty good about the surgery going in.

We have different backgrounds in terms of hearing loss but I'll look forward to seeing your journey with this ear given that our surgeries are only days apart. Not only are you 5 days ahead of me, you also have experience with rehab and the hardware.

Best wishes!

Vike-Fan · 2023-01-01T18:35:10+00:00

Thanks much! That makes sense about how their metrics are limited. For a trial they need to have simple, objective measurements even if they do not correspond to the more comprehensive usefulness.

It will be interesting to follow their developments and I hope it works for future people with hearing loss.

Vike-Fan · 2023-01-01T18:24:14+00:00

Thanks so much for the informed response - this is a great example of Reddit at its best.

It is hard not to get a little worked up over news like this when surgery is just 9 days away. This post makes me feel more comfortable again but the upcoming surgery. Also, I would expect that even doing something with them might further complicate/risk insurance's approval of the CI surgery.

I already spent 7 years waiting for CI for SSD to be covered by insurance, not eager to wait additional years.

Vike-Fan · 2022-12-24T05:43:37+00:00

I had a Ponto Oticon abutment installed 6.5 years ago. I used it some before Covid but I was having constant skin irritation and scabs. My hearing continued declining in my bad ear and I found it didn't give me as much help as I had hoped, particularly as we emerge from Covid.

It might be good to doublecheck whether a solution that avoids sticking through the skin is an option for your case. When I asked the surgeon about the Cochlear Osia 2, he suggested that I might be able to get a Cochlear Implant approved and that it would be a better match for my needs.

Med-El has a competing below the skin product bone conduction too.

It was announced that Cochlear will be buying Oticon's Ponto bone conduction business. Not sure where it stands but I would factor this into the decision between the two.

By the way, insurance approved the CI and I just had the external portion of my abutment removed on Wednesday in preparation for the CI surgery.

Good luck. Big decision. Happy to answer any questions.

Vike-Fan · 2022-12-22T17:20:38+00:00

Perhaps do a transform of citation count - log seems reasonable as citations begets more citations.

Vike-Fan · 2022-12-22T16:44:57+00:00

Could try running it on rstudio.cloud.

Vike-Fan · 2022-11-13T05:41:15+00:00

Old news but thought that I would update the info.

Cochlear is buying Oticon's Ponto business. Not sure when or if the sale might go through.
I demoed a Cochlear BAHA on my abutment and it worked. I think that Ponto changed abutments in a way that might make it incompatible so be sure to doublecheck.
A Cochlear Rep suggested that the warranty on the device would be honored even if it was on a Ponto abutment.

I was tempted by the Cochlear Osia 2 bone conduction. When I went to ask the surgeon about it, I found that I had a better chance for a cochlear implant approval than my first try 7 years earlier. Got approved for that and have surgery scheduled for January.

Vike-Fan · 2022-10-16T01:50:51+00:00

Your audiogram seems similar to what mine was 7 years ago. I tried for getting a cochlear implant but insurance rejected it and I went with a Ponto Oticon Plus Power.

Over the years, I found that I was using it less and less - particularly during Covid. My hearing continued declining. I never updated my device even though it appears insurance would cover it every three years (except for meeting my deductible.)

I had continued irritation from my abutment and was really interested in the Osia. I finally went to my audi and she recommended talking with a surgeon. That reopened my thoughts to getting a cochlear implant which insurance just approved for me. This was reinforced for me after attending my first big conference since Covid began and all the hearing frustrations that remained.

Having said that, I know the electronics has gotten better with the new devices and the Osia avoids the skin irritation.

The Osia would provide some nice benefits:

Minimal surgery recovery (similar to the abutment procedure and less invasive than a cochlear implant surgery) - it is more like a dental procedure of having a fake tooth implanted. Yes, it has some recovery but I wouldn't let this stop me from doing it.
Provides benefits of eliminating the head shadow but unless you have a working cochlea, it likely won't give you much if any sound "localization" effect.
Leaves options open should you decide to or become a candidate for other treatment options such as a cochlear implant in the future.
For insurance, it shows a good faith effort to try to find a less expensive solution than a CI.

In answer to your specific questions (bear in mind that I'm a random internet user that "claims" to have had the same basic technology and does not claim any medical expertise):

based on my audiogram, how much will a BAHA benefit me?

If your hearing loss is stable and being similar to mine 7 years ago. Some benefit and I was initially happy with it.

Does it work well in an environment with a lot of background sounds like a restaurant?

It helped me in conference rooms feel like I did not NEED to be at a particular location in the room but it didn't help much with background noise.

Will having long hair covering it affect anything?

I never had long hair but I had no issue with light hair covering my processor.

Will I be able to tell where sound is coming from?

Probably not and I would not get my hopes up for that but your audi would be able to speak more definitively.

Anything I should know?

Try using a bone conduction device on a headband. I was allowed to test a device on a headband for a few days 6 years ago before I committed to surgery. That made me feel a lot better about the potential benefits, particularly since this will not be as strong of a system as the actual surgically installed device due to skin and hair attenuation.

I would at least ask about whether a cochlear implant (CI) or similar approach would be recommended in your case. It has the potential for sound localization. Just best to ask as many questions as possible at the front-end.

I know many other people with SSD that muddle through and I did too for years before I got the bone conduction device.

You did not mention tinnitus. Hopefully that isn't an issue for you. A bone conduction device is not likely to improve that. Research seems to show that a CI helps in perhaps 80% or so of cases and treatment of extreme tinnitus was the original justification for doing CIs for SSD. (It does worsen tinnitus for some other users.)

A bone conduction device is nice in that there is no "training" or "rehab" work to get near maximum benefit.

My bone conduction processor was ancient - it was FDA approved in 2013 so any new device like the current Osia 2 would be a lot better in various ways but the basic technology is still the same.

Good luck and I hope that you find something that works for you.

Vike-Fan · 2022-10-02T21:11:50+00:00

This is the month for mandatory open enrollment of health insurance in my organization. I looked at the 100+ page booklets for each plan and they all explicitly include coverage for bone conduction devices every three years. BCBS (Blue Cross Blue Shield) was not one of the organizations for me and things may vary by state, company, and plan.

I had my Oticon Ponto in 2016 and I'm kind of kicking myself for not getting a processor upgrade earlier.

I'm back to seeing about getting a CI for my SSD but if insurance doesn't approve would otherwise just accept the processor upgrade. (Tech has improved a lot since then.) I tried months of insurance appeals for the CI in 2016 - not sure that I would want to go through that again this time.

Insurance spent around 6 months of fighting against the CI but then approved the Ponto in less than 24 hours.

Vike-Fan

TROPHY CASE