Finally back on the journey to potentially CI(s)

G’Day.

I’m finally back on the journey to potentially be fitted CI(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 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. 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.

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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.

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Curious, why is this your third attempt?

Good luck with your testing.
My thoughts are, the doctors usually won’t recommend CI 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.

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

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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 CI, it’s all in the inner ear.

:slight_smile:

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

The First consultancy in early 2012. My right ear was still too good for candidacy.
However, My ENT 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)

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

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Yeah, hers is middle ear, mine is inner ear (into the cochlear on both ears). My middle ear(s) are perfectly fine except for the Stapedectomy on the left.

Thanks for the detailed explanation.
It helps us understand where you are at when we are asking questions.
Quite a hearing history.
Good luck

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 CI 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

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

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 CI 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.

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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/460575372

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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% WRS. 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 CI 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.

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I realise that! That’s why the surgeon said it’s unlikely to work BUT she had the choice to have an CI 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.

@Deaf_piper When you say 40% and 60% WRS, 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 CI 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!!

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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.

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