Just starting my journey

[Kathryn]

Hi, I have single sided deafness and got a hearing aid for the bad side 6 years ago.  Noticed over the last 6 months that the hearing aid was no longer of much or indeed any benefit.  Visit to the audiologist a few days  ago confirmed I've now lost hearing in the bad ear to the extent that I am now a  candidate for CI here in Germany where I live.  Big shock!  Although I speak reasonable German my home and much of my work life runs in English ... hence over here in  the english part of the forum.

[Mary Beth]

Welcome @Kathryn!  Wishing you the best on your CI journey.

Next up an appt with a CI surgeon?

[Kathryn]

I have to go back to an HNO (Ear nose throat) Dr. first to get the official referral for the German health insurance  ... haven't been back to the last one for 6 yrs because here in DE the audiologist takes over for hearing aids. Toying with the idea of going somewhere else nearer to where I moved to 4 years ago, but maybe having to wait 6+ weeks.  I'm on holiday this week so have been reading up on everything!

 

[Mary Beth]

@Kathryn

feel free to ask questions.  We are a friendly group. I will also give you a link to our May HearPeers GoogleMeet in case you want to join in.  It’s a group of Med-El CI users on the forum.  A very friendly bunch.

follow this link and reply there if you wish to join in

 

[Tim]

Hello @Kathryn,

I was just in Hanover and Berlin last month visiting my son and may go again at the end of the year.

I have SSD too and first had a CI recommended about 7 years ago but because of insurance, only got the surgery in January of this year.

There are quite of us new SSD people in HearPeers that are recent implantees. 

Glad that I had it done. 

My old 24x7 tinnitus on that side is pretty much gone while wearing my processor.  Speech recognition is steadily getting better - I'm sitting here in my office right now streaming podcasts straight to my processor.  I can't do some some podcasts if they aren't clear speakers or recordings but others I can accelerate to 120% speed. My wife has noticed that I hardly ever do the SSD "head turn" now. 

The journey for rehab is a little different from our bimodal friends. It is a little harder to isolate the CI side for focused practice since the good ear wants to do all of the work so it is harder to just practice with people.  On the other hand, streaming works well for doing a lot of practice.  I try to stream  at least a couple of hours a day.

Welcome to the group and happy to help!  I got so much help from the people (especially @Mary Beth) here and glad to return the favor.

[Kathryn]

Thanks for the welcome Mary Beth and Tim.  On Friday last week when I got my bad news I was pretty shocked, tbh I had tried to gloss over the fact that for some months my left ear wasn't bringing anything to the party!  Thought the hearing aid just needed adjustment.  Having read up alot now I feel more hopeful, in fact I've not had great performance from the ha for a while now and working in a busy school office it has been hard ... I'm so fed up of asking people/students to repeat themselves and feeling anxious about hearing issues.  I have a training coming up which will be in a group and in German and I am kind of dreading it.

[Mary Beth]

@Kathryn

We first implanted my long standing totally deaf ear which had not processed any sound at all for 24 years following a surgery for Ménière’s but had heard to varying degrees prior to that.  Having a deaf ear made listening so challenging.  Always being aware of which side faced people and never knowing the direction of sound was frustrating.  These CIs have been life changing.  I hope you can get scheduled soon.  Here is a link to my story in case you are interested.

 

[Kylie]

Hi @Kathryn

I am also SSD, was implanted 4 years ago and going great now!!!  There is definitely hope for improvement with a CI.

[Kathryn]

Saw the ENT yesterday and received my referral to the local CI clinic, emailed it off immediately  - hope I get an appointment soon.  The ENT ran a quick test and I've uploaded it.  Can anyone tell me ... for my right (good) ear, is it looking OK?  Stupidly didn't ask at the time.

Audiogram 4 May 23.pdf

[Mary Beth]

This link may help you @Kathryn

https://medicine.uiowa.edu/iowaprotocols/how-read-audiogram

Your right ear shows hearing within the normal range except for the highest two frequencies tested.

[Kathryn]

Thank you!

[Kathryn]

So I had a first appointment booked for early June, but decided I didn't want to go to that particular hospital,  so rebooked in a smaller place which is also close to my home ... now I have just under 4 weeks until that appointment which feels like eternity!  So impatient to get going.  I seem to have hearing fatigue right now,  by which I mean I am constantly shattered from relying on the one good ear in the school I work at, plus tinnitus is much worse.  I really hope I might be lucky enough to see an improvement in the tinnitus eventually after surgery.

[Mary Beth]

@Kathryn

I hope so too.  My tinnitus is not noticeable at all when using my CI.  I hope you get the same experience.

[Kathryn]

So after a couple if appointments and a delay caused by not being booked for an MRI, then the radiology practice not sending my head pics thru, just the letter ... I had a 3rd appointment with the surgeon this week.  Sadly I have an acoustic neuroma sitting in a particularly awkward place at the entrance to my cochlear.  Surgeon considers removal ill advised and says a CI is therefore not possible.  I'm gutted.

Currently trialing a bicros HA from Signia.   The extra amplification of the lost high tones in my "good" ear helps.   The cros function is a waste of effort for me working as I do in administration in a loud busy school office with buckets of background noise. My Tinnitus is awful ... I was so hoping a CI would help there too 😥

After we address the AN issue to make sure it doesn't grow and do more damage, hopefully by some type of radiation therapy, surgeon says could consider Bonebridge.  I can't work out if that would give me hearing in my deaf, or only to the good side.  Since a HA on the right side is probably necessary would likely just stick with bicros unless bonebridge gives me feeling if hearing in my left bad ear.  Anyone have bonebridge advice?

[Mary Beth]

I am sorry @Kathryn.  There are a few HP members here With BoneBridge.  I will tag @MED-EL Moderator too in case they can help connect you with BoneBridge mentors.

[MED-EL Moderator]

Hi Kathyrn,

please click here to connect with Hearpeers mentors from all over the world: Connect with Hearpeers Mentors from around the world (medel.com)
Here, you can choose your preferred language and implant type. 

We also recommend checking out our users' stories and experiences with BONEBRIDGE: You searched for BONEBRIDGE - The MED-EL Blog (medel.com)

Please let us know if you have further questions.

All the best,
Gordana

[Kathryn]

My story continues!  I am now under Uniklinik Würzburg to deal with the accoustic neuroma (AN) diagnosis since they have a specialist dept.  My tumour is little (about half a cm) but has made me completely deaf on that side and is now giving me vestibular issues which have got quite bad over the last 3 weeks, but physiotherapy exercises are helping.  If it grows too quickly I would anticipate gamma knife treatment rather than surgery, thank goodness I have that option with the size of it, plus the fact that I can't lost my hearing from gamma knife - it is already gone.

This week will have another MRI undertaken in a special set up of the MRI machine which will make the pictures particularly clear, and another CT.  The assistant of the Professor in the CI dept phoned to say having discussed my scans etc in conference, he thinks he may be able to fit a CI!!  🙂  He would leave the AN in place (it is just outside my cochlear which is unusual, but is why I am 100% deaf on that side despite the small size.  Obviously when I see him Friday I need to ask about success rates for it working if he does indeed think it is doable  having reveiwed the newest MRI.

My question is would a CI on the deaf side help in loud backgrounds better than cros aids which obviously are not so great? They have helped well in quiet backgrounds both at work and home - I am still trialing them since don't want to fork out the cost if I end up doing a CI.   I suppose I feel a bit overwhelmed with everything since the AN diagnosis and that makes me overthink the CI operation whereas earlier in the year I was 100% up for the CI.  

So, if you are SSD can you tell me that you definitely have better hearing generally with your CI? Would I feel like I have sound coming in on the CI side?  Do you now have directional hearing?  I'd have a hope that the tinnitus might switch off when the processor was on?  I guess I just need to be bolstered up a bit by some success stories!!  With the cros aids I am still 100% conscious that I can only hear on one side, would that go with a successful CI (after I'd put in all the rehab etc).  Would I feel somewhat normal hearing with the nearly good right ear, and a CI in the left?

Thanks for any comments ... Kathryn

[Tim]

@Kathryn Great to hear from you.  I might be headed back to Germany in late June or early July. 

I'll try taking a try at the questions.  Of course it is a sample size of 1 and everyone's hearing journey is different.

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So, if you are SSD can you tell me that you definitely have better hearing generally with your CI?

Yes, with SSD I definitely do better with my CI than without.  My wife has noticed the significant difference in social interactions and I could see a big improvement in work situations. 

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Would I feel like I have sound coming in on the CI side? 

The CI side feels like it blends with my normal hearing so I have spatial awareness that I did not have before the CI and only one good ear.

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Do you now have directional hearing? 

Yes, I can tell where sounds are coming from.  Not perfectly but so much better!

 

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I'd have a hope that the tinnitus might switch off when the processor was on? 

Pre-CI I had tinnitus 24x7, maybe perceived as approximately 50 dB.  Very annoying.  Greatly reduced or eliminated now. 

 

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I guess I just need to be bolstered up a bit by some success stories!!  With the cros aids I am still 100% conscious that I can only hear on one side, would that go with a successful CI (after I'd put in all the rehab etc). 

I am glad that I did the CI and feel that in terms of "success story" - I'm about average.  There are people that had golden activations and success right away as well as others that have had not had success. 

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Would I feel somewhat normal hearing with the nearly good right ear, and a CI in the left?

That is my situation.  0-20 dB attenuation in my right ear, CI in the left. 

There are times that I do better than my wife in hearing. (She has some loss but not enough for hearing aids yet, say 10-30 or 40 dB.) For example, I sometimes hear her beeping devices from another room when she doesn't notice them despite sitting right next to me. My ability to get directionality of sound may lag hers a little but it is close. 

Here is some of my "feel good" accomplishments since the late January activation.

• I have listened to well over a dozen audiobooks streamed to just my CI. Great for rehab!  Also many podcasts.
• I have not had as much success streaming phone calls to my CI.  Often because the speaker on the other side is using a speakerphone or in the car with road noise. 
• I listen to music streamed to my CI for rehab but it is not as enjoyable as music "over the air" where my good ear helps.  I still rely on a curated collection of select songs, about 90, that I tag for listening to.  The other 1500 songs from my old CD collection are not nearly as recognizable/enjoyable.
• The reduction of extra exhaustion in loud meetings/social situations due to background noise.

As an SSD person, I do a lot of streaming for rehab practice but it is not necessary to do rehab that way as much as I do.  Just wearing it during the day is also good rehab.  I'll sometimes use an intermediate solution of wearing an earplug or construction earmuffs leaving my Rondo exposed so as to keep my good ear from completely dominating things.

Good luck and happy to help.

By the way, I've been doing a small monthly zoom for fellow SSD and/or recent implantees.  The next one is Thursday 12/14 at 5 PM Pacific Time (Los Angeles time if that helps.)  I know it is not a convenient time for Europeans but if you want, feel free to message me for an invite.  Same for any others that would like to participate.

 

[Tim]

Forgot to mention - I didn't try CROS but used a bone conduction system for 6 years. Different technologies but essentially similar results of relying on the good ear to carry the weight from bad ear side.

Just a couple of months after CI activation it was so much better than my bone conduction system ever was for the following reasons:

• Reduction/elimination of tinnitus in my bad ear
• Directionality of sounds
• Clearer ability to hear overall in meetings/background noise

I found that I rarely bothered to even pull out my BC device.  My wife's biggest concern about the CI was that it would just go unused like the BC device.  I use  the CI every day.

My biggest "special problem" was three vertigo and nausea episodes but that seems solved after vestibular physical therapy. 

Again, everyone's experience is different. There are people that have done better and those that have had worse experiences. 

 

[Rob Gellner]

Would an Auditory Brainstem implant work if they couldnt do a CI?  I think they are used when a CI isnt possible

[Kathryn]

I really don't know,  I'll find out tomorrow.   It is very strange to even be thinking of an implant again after my first surgeon's opinion that it wasn't possible.

[Kathryn]

@Tim Thank you so much, that makes me feel much more confident.   I don't know why I have had this wobble!  My mother and sister both felt I should forget about the CI and I guess that weighed on me. They think, if I give up working it wouldn't be needed ... but I haven't decided to retire yet, just frustrated and struggling with noise issues and the vestibular problems.   Will be interesting to see what is said at hospital tomorrow!

[Kathryn]

So, a year since it was confirmed that my left ear gave up the ghost! Things have moved frustratingly slowly … and then got held up whilst we considered the acoustic neuroma issue in the ear, which was first diagnosed due to an mri after a vertigo attack back in 2016, but I had not understood what was said to me in the consultation in German and hadn’t given it a second thought.  My hearing started to fail in the high tones in 2010, so it had probably been there a long while previous to 2016, and it still seems to be the same site.

The Dr wanted me to try a baha on a headband after my December appointment because he couldn’t guarantee that a CI would work with the presence of the AN, which he does not want to remove - they prefer to leave well alone which is the general rule for AN’s if they are not causing facial issues, continual vestibular issues etc.  It’s already made me deaf, so …..  I tried the baha for 2 weeks in early January.  It was great not to have the cros-aids in my ears, but of course the headband is quite tight and you look ridiculous!  But it worked ok.  I have not had the cros-aids since February as they were on trial, so I’m not hearing well at the moment … fortunately moved back into an ultra quiet single office at work as in the 3 month run up to Xmas I was in a hugely noisy, busy shared office which nearly killed me.  It triggered all the AN symptoms majorly.

Finally went back to see Dr this week.  He will attempt a CI, using Med El equipment to monitor and test the hearing nerve, he also wanted to have the longest fitting electrodes possible so that he could hit as much of my cochlear as possible.  So I don’t have to chose my provider it has been chosen for me and just in time for the new streaming gadget for the Rondo3.  All very good.  If once he is in my head he does not think it is going to work, he will implant a bone bridge.  I’m pleased that he is not insisting on an “abutment” version BAHA, because this is the direction he was going in in December.  I’ve signed my operation paperwork … I guess they’ll do the application to the health insurance at some point (I did have agreement already for a CI, but with a different surgeon who was not an Accoustic Neuroma specialist, so he would not do it).  End April or in May should be operation time.  

It will be strange going under the anaesthetic and not knowing what I’ll wake up with.  Obviously I want a CI … I so want to hear in my left side again and maybe have the chance to get rid of the tinnitus I have, which the bone bridge implant would not do (in fact it would be on my left bad side, but I’d hear on the right good side via bone conduction.

Down the line, if I start having problems linked to the AN, at worst they’ll have to remove the implant … mri’s will be not so great since there will be a shadow caused by either CI or bonebridge, but he didn’t seem phased by that.  I’ve decided not to be either, ha ha.  I am presuming my AN is done growing, which is what happens in the majority of cases.  I am lucky there.

So … once again I am quietly (literally because everything is quiet at the moment with no hearing decide) confident that soon I’ll have my surgery, and I can’t wait!

[Mary Beth]

@Kathryn

thank you for the update and wishing you the very best!

[Kylie]

Good luck Kathryn. I am also single sided deaf with a CI which I love, and I will cross my fingers that you wake up with a CI too!