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Finally back on the journey to potentially CI(s)

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G’Day.

I’m finally back on the journey to potentially be fitted (s) from a long avoidance of nearly 10 year (this is my third attempt). You have all be an immense help in calming some of my anxieties, most of which is about hearing quality with what left of my hearing and what to do with this thing on my head with my motorcycle helmet (but that’s a minor issue).

My main concern with doing the surgery in my Inner-Ear Otosclerosis. With the massive buildup of bone calcium inside the cochlear (as seen from my last ), I’m doubting they can get the probe in there, and them there is the 50% nerve die-off due to the cochlear inability to feed audio signals to the nerves.

I have done my pre appointment with their Audi and done all the pre hearing tests, so they say we might start with the right ear.

I am booked in to see the in Launceston on the 16th June. So we will see what she has to say. from a long avoidance of nearly 10 year (this is my third attempt). You have all be an immense help in calming some of my anxieties, most of which is about hearing quality with what left of my hearing and what to do with this thing on my head with my motorcycle helmet (but that’s a minor issue).

My main concern with doing the surgery in my Inner-Ear Otosclerosis. With the massive buildup of bone calcium inside the cochlear (as seen from my last MRI), I’m doubting they can get the probe in there, and them there is the 50% nerve die-off due to the cochlear inability to feed audio signals to the nerves.

I have done my pre appointment with their Audi and done all the pre hearing tests, so they say we might start with the right ear.

I am booked in to see the ENT in Launceston on the 16th June. So we will see what she has to say.

9 people in this conversation11 min readJump to latest
@BrBarry said:

My main concern with doing the surgery in my Inner-Ear Otosclerosis. With the massive buildup of bone calcium inside the cochlear (as seen from my last MRI),

I follow this blog who has meningitis as a child. One ear had been deaf since a very young age. The other ear has some hearing with a hearing aid.

She had her hearing aid ear implanted first and then she decided to try the other ear even tho the surgeon said it’ll unlikely work due to what meningitis had done to the cochlear.

In the end, she actually gets better results from her bad ear with her cochlear implant. She was quite shocked.

They did have to drill into the cochlear as her cochlear was mainly bone. Not 100% sure how that works but she’s had good results.

Curious, why is this your third attempt?

Good luck with your testing.
My thoughts are, the doctors usually won’t recommend if the chances are low of success. That includes physical and mental testing. You have to want CI, do the rehabilitation that’s needed to succeed.

Keep us posted please.

@Raudrive said:

All CI’s are drilled into the middle ear to get wires to the cochlea. My understanding.

But her cochlear was completely bone. There is a difference between a normal cochlear that has just lost the hair and a cochlear that has been damaged my meningitis. It literally turns to bone.

From how I understand it, the middle ear doesn’t come in the effect with a , it’s all in the inner ear.

:slight_smile:

image

@BrBarry The moderator MaryBeth on the Med El Hear Peers forum has a with Otosclerosis. You can check out her blog here.7 If you want more info, you could check out that forum. I may end up with , but I have tried to explore all brand of CI forums and resources to learn things.

In reply to @Raudrive

@Raudrive said:

Curious, why is this your third attempt?

The First consultancy in early 2012. My right ear was still too good for candidacy.
However, My suggested we do a Stapedectomy on the left to try and lift that back up, and it worked, I got about 20dB back. Therefore, taking me off the list for a few years.

The images below are pre Stapedectomy (first/left - Feb 2012) and post surgery (second/right July 2012)

Audiogram (23-Feb-2012) Audiogram (06-July-2012)

The Second was in 2018. While this time definitely with candidacy range, I was moved from Melbourne to where I am now in Hobart. So needed to redo all my research for local Audi and ENT, But COVID stop everything till last year.

So this time all my planets are beginning to align. Now on NDIS for most funding, including my new Naida P90 UP 675, but will not cover any medical. so we will see how we go

In reply to @BrBarry

BrBarry it sound like you are very worried about the surgery and the possibility of success. From what you are describing I don’t blame you one little bit… I have normal ear structures and was worried silly.

I personally sat on the fence for 18 months after evaluation do I, don’t I, back and forth I argued with myself. I don’t have your inner ear problems either.
IMO I would be wanting to jump a plane and get a referral to the Eye & Ear Hospital in Melbourne. Get a second opinion from the best team available at the E&E in Fitzroy.

If you came over to Melbourne for surgery, you can still go to Hobart for your mappings if you so wanted to. Or you can keep going back to the E&E.

Keep us updated on your journey, we’re here to help if we can…

Thanks for the support @Deaf_piper

@Deaf_piper said:

Get a second opinion from the best CI team available at the E&E in Fitzroy.

My Victoria is in Williamstown, who is a surgeon at E&E, and he recommended the Tas ENT.

@Deaf_piper said:

IMO I would be wanting to jump a plane and get a referral to the Eye & Ear Hospital in Melbourne

However, my last couple of flying experiences back home to Melbourne have been excruciatingly painful. My ears no longer ‘equalise’ correctly and suffer for hours/days later. So I am refusing to fly. I take the boat these days, but it’s more expensive.

But I do think the Audi did say that the surgery maybe at E&E Melbourne. We will see what the plan is. I’m trying not to make it a factor in my decision.

@BrBarry said:

[However, my last couple of flying experiences back home to Melbourne have been excruciatingly painful. My ears no longer ‘equalise’ correctly and suffer for hours/days later. So I am refusing to fly. I take the boat these days, but it’s more expensive.

I have this problem and use a “Eustachi” pressure device. It is a lifesaver for airplane rides. My ears are fine going up, but during descent my middle ear depressurizes and I am left in terrible pain for 3 to 5 days. Before I found out about this device, I would use Sudafed and Arfrin. The drugs do help the pain go away quicker, but with the pressure device I no longer need them. Here is a link to it:
https://www.walmart.com/ip/Eustachi-Ear-Pressure-Relief-Device/46057537217

In reply to @BrBarry

Br Barry I wish you all the very best in your endeavour to try for better hearing. Please let us know how your June appointment goes… :four_leaf_clover::four_leaf_clover: So if your surgery does happen at the E&E does that mean a ferry across for you? I wish Australia had the US qualifying score of 60% . When I went through 3 years ago it was still 40%.

@Zebras children who have had meningitis have approx 1 month, to have a successful operation. After that ossification starts to set in. It really puts parents in a difficult spot, they are having to make this decision virtually on the spot. All this without the benefit of research. It’s the same thing for adults who get meningitis.

@Deaf_piper said:

It’s the same thing for adults who get meningitis.

I realise that! That’s why the surgeon said it’s unlikely to work BUT she had the choice to have an in that ear anyway and chose to have one. As I said, she actually had better results! Obviously everyone is different and what works for one, may not work for another.

In reply to @Deaf_piper

@Deaf_piper When you say 40% and 60% , what exactly is that measuring? I was evaluated at 63% but not sure what that means. Is that both hears with noise and with hearing aids? I am waiting to hear if Vanderbilt will consider a for my left ear. It seemed to me that the word, sentence and noise tests were very unrelated to real life hearing in my opinion. throw a mask on someone and I’m clueless!!

Joan it’s your Word recognition score and sentences all in one. It’s how much you can hear overall in a quiet environment. So you can hear 63% of conversations.
Yes that’s both ears to my understanding. Yes masks make it very difficult.

Update First of all, Had my first appointment with the yesterday, which got moved forward. Didn’t want to remove her mask, but typed in a Word doc as she spoke (also a good way to keep notes).

It seems to be pretty much my decision on what we do. She suggested possible doing a double stapedectomy to try and improve things, But I don’t thing there would be much gain, judging by my last one on the left ear (although it was successful).

The only thing I’m disappointed about, I need to now go and get another set of & Scan, which I pointed out the initial Audi that it was 10 years since my last, and that they could have been done in between the month of see the two of them.

So, Next appointment is in August.

Edited

Update.

Yes, it’s been a while since my last appointment in August (I have been busy with my teaching and other ministers, to be able to sit and reflectively write an update). There were/are good and bad outcomes.

From the results of the & Scans, my own assumptions were correct, my Inner-Ear Otosclerosis is still getting worse.

Although, she (the ) seemed positive about the fact that there is still some air space in the cochlear for the probe to work. However, it’s getting it in there is the major problem. She was really confident the cochlear implant would work and improve some hearing functionality, IF the operation was successful, and I told her, through my interaction on this forum, I was committed to whatever it took to make it work.

However…

The whole premise of success is based on the success of drilling a hole in the ear to get the probe in (there is no alternative, because the front of the cochlear had completely sealed over), and this would be a non-reversible operation. That meant if the initial operation failed, it would completely damage that ear forever. This new totally shattered my confidence.

I told her, if she was not 100% certain of success, it wasn’t going to happen. She said she was going to Melbourne to consult with the peer ENT group @ Royal Melbourne and get back to me.

However, I have personally decided to not go a head with the and to continue on my current trajectory without cochlear. I’m estimating, I have about 5-10 years before I am completely DEAF. So far I am OK with this, we will push the boundaries of all available technologies for as long as I can.

Edited
@BrBarry said:

However, I have personally decided to not go a head with the CI and to continue on my current trajectory without cochlear. I’m estimating, I have about 5-10 years before I am completely DEAF. So far I am OK with this, we will push the boundaries of all available technologies for as long as I can.

I had moderate to profound loss on the ear to be implanted due to low (10%) speech recognition score in that ear 5 years ago, I got it and I did not wait at all to get it from initial appointment with clinic. I jokingly ask this year, can i get implanted on my other ear (which has a high (80%) speech recognition score) they said no. I have Cochlear Nucleus 7 implant system back in 2018, I just upgraded to Nucleus 8 sound processor recently I love it and I do not regret losing my hearing in that ear.

However your complicated procedure makes it less ideal for you but based on your , you basically have no hearing left on both ear and what do you have to lose?

In reply to @BrBarry

Hello Barry,

My experience is similar to yours except I went ahead with the implant. I posted my experience in another thread but I’ll tell it again.

I got my first last March. I had pretty much success from the beginning as I could understand speech right away. That was done in my left ear which had pretty much zero word recognition. It did have some ossification but only required a hole drilled in the cochlea to insert the electrodes.

Since I was also eligible for a CI in my right ear (Slightly better than zero word recognition) I decided to go bilateral. That surgery was done last October. Since it was my better ear and with the success of the left ear, expectations were high, for me and my surgeon.

Ossification was much worse in that cochlea to the point that the surgeon could only get 4 electrodes in which was determined upon activation.This was not enough for me to benefit from. My Audi and surgeon both said that 8 to 10 electrodes are needed for it to do any good.

After a current scan, my surgeon believes he can get more electrodes in. I’m going to give it another try.
I believe in my surgeon. If it doesn’t take this time, I’ll be happy with what I’ve got in my left ear, because without it I’m deaf.

I’m looking at a possible February 13th surgery date. I’ll keep everyone posted.

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