Introduction to the Implant Clinic

Tuesday was the day. The next step into the cloud, the next station along the line: our introduction to the Implant Clinic. I will confess that I have been to the Clinic before, but that was about 5-6yrs ago with Jarrah, and we didn't get past the 1st appointment as they felt he was functioning too well to be a candidate. This was quite different. I knew there was little chance Jonica would not be a candidate, although there was still a nagging doubt because of how well she functions relative to her audiograms. Still, I knew we were there with intent, not in the air of investigation.

A bus ride later, and we were there. Ah, Mater Audiology, how I have not missed thee. Like riding a bike really, once you go there enough times you never forget. The difference this time was being there with a 3yr-old instead of a newborn, so we stayed within the dept rather than going up various combinations of lifts to get to where we needed to go. But the same facilities, the same waiting area, the same collection of parents with tiny children waiting their turn...

After paperwork and a brief toilet stop (always count on the 3yr-old needing to go to the toilet as soon as it's her turn to be seen!), we met the audiologist and speech pathologist for our appt. Sadly they hadn't received Jonica's history so I gave a brief history of everything, with particular emphasis on what had happened recently. They did have her latest audiogram, so at least they had a baseline from which to judge what they saw in the appt.

Once they had a picture of where things were up to, we went to the sound booth to do some testing. At first Jonica was very unsure of the *enormous* headphones they wanted her to wear, but then when i suggested and they offered the usual inserts instead she decided that was ok. *Phew!* nothing worse than a child who won't participate in the testing you're there to do! Fortunately Jonica is a very reliable tester, her responses are very consistent and she stays on-task well, so we got another full set of air-conduction results.

Right ear: mostly stable, only some variation at 3kHz.

Left ear: all frequencies down again by 10-20dB

250Hz: 100dB

500Hz: 100dB

1kHz: can't remember, about 110dB?

2kHz: can't remember, about 115dB?

4kHz: no response 

What?!?

I must confess, that really caught me by surprise. I knew her left ear was bad, and I knew it was really in implant territory, but I hadn't expected it to deteriorate again, in only 4wks. This time, nothing was better than 100dB, and in fact she gave no response *at all* at 4kHz. Her high frequencies appear to have disappeared altogether. She's usually so stable between her big drops, I was just so surprised to see those results...

So, there's no question really. She's certainly a candidate. That doesn't mean we *have* to go ahead, but if she's struggling, why wouldn't we? Why let her struggle just because she's bright enough to get by? What if her right ear suddenly disappears, what then? And why shouldn't she have the best chance, if it's possible? I'm beginning to feel like we really don't have too many options here...

More appointments. Following up from this one, we'll be back at the clinic on Tues 10th of June for Speech assessments at 9am, followed by more audiology at 10:30. We're waiting to hear back from the surgeon about arrangements for a CT scan to be done under general anaesthetic. Then there's likely to be more ENT, followed by surgery. Then it really begins! 2-4wks after surgery there is switch-on, when they actually turn on the device, then an unbelievable schedule of appts until 6mths post-switch-on. Seriously, can't they put all this on ONE piece of paper? I've had to piece this together from several sources, and I'm still not convinced I've got everything. Maybe that's what I'll do, put it all on one piece of paper...

Next appts: Tues 3rd June Optometrist (all kids, just checking...)

                   Tues 10th June Implant Clinic Speech & Audiology

Back to ears...

Having decided that an implant was really the only viable option for Jonica's left ear, we had an initial appointment with the Implant Surgeon. Of course this involved getting the whole family into the city by 8:15am on a Monday morning, so that was an adventure in itself...

We asked questions, Surgeon described how an implant works. After viewing her audiograms he agreed that an implant was the best solution. Again, not urgent, but best not left too long. But nobody seems to be able to give us any idea about the process, what happens next, what even needs to happen. I'm sure there's some sort of standard-ish procedure, but nobody seems to be able to tell us what it is!

Around the time of this appointment, I received a letter from the Implant Clinic, telling us we had an appointment on Tues 27th May, at the hospital's audiology department. I just love it how they consult families about these appointments. One phone call, what days work for you, then they just make the appointments for you. Anyway, looks like this is starting to get real.

The following Friday, 23rd May, we had an Aus Hearing appt already booked. Back in February I had ordered Jonica an FM system cos I thought it might help her at Kindy. Basically, the teacher wears a microphone transmitter and Jonica has a receiver that plugs into her hearing aid. That way, the teacher's voice goes straight to her hearing aid and she hears instructions and directions more clearly, no matter where in the room she is. After all the appts in April, we decided to keep this one, and turn it into a full FM fitting rather than a hearing check.

The FM fitting was a resounding success. They're actually no longer FM's in the true sense of the word, they no longer use FM channels for transmission. They actually use 2.4Ghz wireless transmission, which solves a bunch of technical issues found with FM. In essence, each transmitter creates its own ad hoc wireless network and receivers can join that network and listen in to the stream of sound being sent from the microphone. This means there are no crosstalk issues as there were with FM systems (two systems on the same channel in close proximity would hear each other), and it's now a digital signal so it's even clearer in the hearing aid. The receiver automatically detects and joins the network when it becomes available, and the transmitter can still transmit an FM signal at the same time as the wireless signal. Brilliant. FM receivers find the channel automatically too, so when I pick Kaelen up from school while wearing the transmitter, his FM receiver automatically connects to my transmitter, no button pushing required. It's simply amazing. It's how technology should be - it just works!

Technical distractions aside...I used the transmitter with Jonica all day on Friday, and it cut the instance of "What?" down by about 75%. Which is amazing, because that was probably the most common word coming out of her mouth. If she couldn't see my face, she was really struggling to understand anything I said, even in good listening environments, and I was getting really tired of (a) repeating myself, (b) yelling, and/or (c) speaking like a tortoise so she could understand me. I used it in the car on the way home, and it was like a dream - I could talk in my normal voice and she understood me! Because she really only has one functioning ear at the moment, I'm using the transmitter all the time to give her the best access to our speech. Sure, she might become dependent on it, but I'd rather she understand me than wear herself out trying.

Next appt: Tues 27th May Implant Clinic Audiology & Speech appt

Teeth?!?

So this next appointment, Mon 12th May, may or may not have had something to do with hearing. Jonica had an appointment with a Paediatric Dental Specialist.

Back in January the kids visited our regular Dentist, and she picked up some hypoplastic enamel on Jonica's 2yr-old molars. We were given a referral to the Dental Specialist but it wasn't urgent so I didn't do much about it. The Dentist asked at the time is her hearing loss what part of a syndrome, but since we haven't found anything else I kind of shrugged my shoulders. Then, once her hearing dropped in April I began to wonder again, so I thought it would be good to look into this just in case it was connected to something.

Thank goodness we weren't late for our 10:30am appt, we were seen promptly at 11am :-\ A fairly standard appt, they were great with Jonica considering her age and having to look in her mouth, confirmed that she has hypoplastic enamel on all four 2yr-old molars and they need stainless steel caps. Under General Anaesthetic. Hmmm...

Having done some more reading since this appt, I don't think it's actually connected to the hearing loss. We don't have to have the caps done right away - although sooner would be better - so I'm going to see if there's any way they can do the teeth and the implant at the same time. Every GA comes with risk, so the fewer the better...

Next appt: Monday 19th May, initial consultation with Implant Surgeon

A New Journey

Oops, about 4 appointments have actually passed since I last wrote here...and it's going to get busier. I'll try to be more regular!

First, 28th April Australian Hearing follow-up.
This appointment was to confirm the results from the 11th April tests showing right ear recovery and left ear deterioration. Jonica was absolutely brilliant as they did a huge range of testing and she remained engaged the whole time, even as lunchtime approached. We did air-conduction on both sides at the usual 5 frequencies, we did unmasked bone conduction at 4 frequencies to get the response from whichever ear is better, then they did masked bone conduction on the left side at 3 frequencies to get an idea of what the left ear was doing. All up nearly an hour of testing, and she was super-reliable and compliant. What a champion!

The results were a mixed blessing. Middle ears were clear on both sides today, so the fluid on the right side has mostly gone, just a blocked eustachian tube still. Here they are:
Right Ear, air conduction
250Hz - 65dB
500Hz - 70dB
1kHz - 65dB
2kHz - 65dB
3kHz - 75dB
4kHz - 105dB
Slight improvements at 250Hz & 2kHz though still within the margin of error, significant improvement at 4kHz, all due to clearing of fluid from middle ears, as expected.

Left Ear, air conduction
250Hz - 80dB
500Hz - 90dB
1kHz - 95dB
2kHz - 105dB
4kHz - 120dB
Slight improvements at 250Hz & 1kHz though still within the margin of error, and further deterioration at 4kHz

Umasked Bone Conduction, response from the better ear
500Hz - 30dB (!!! Previously 55dB)
1kHz - 40dB (!! Previously 50dB)
2kHz - 55dB (Previously 70dB)
4kHz - 80dB (Previously 75dB)
These are very odd results, as they include significant improvements on previous results. Since we also isolated the left ear and none of its results were better, we can reasonably assume that this is what her right ear can do.

Masked Bone Conduction, left ear only
Masked bone conduction is interesting. We've never had it done before, so i was interested in how it worked. They use the same test frequencies and the same bone conductor appliance, but they have to keep the other ear busy so they only get a response from the target ear. To do this, they put an air conduction insert into the other ear and play a beach-like sound (undulating white noise, perhaps?), then send the test frequency only to the bone conductor on the target ear. Amazing! Anyway, technical distraction...
500Hz - 80dB
1kHz - 75dB
2kHz - no response at 80dB
Bone conduction can only be tested up to 80dB, so at 2kHz there was no response at the maximum level. 4kHz was not tested, probably because since there was no response at 2kHz and her air conduction gets worse in the higher frequencies, they wouldn't expect any response at 4kHz.

For those of you who prefer a visual representation, here's the audiogram:

So, this confirms it. The only thing to do is to consider an implant for Jonica's left ear. She can still wear her hearing aid, and they adjusted it while we went and got pizza for lunch, but it's really not going to do enough for her. She's especially lacking in the high frequencies and mostly at 4kHz, which is where a number of speech sounds sit, so she's missing sounds like "sss" and "t". Her speech quality is still deteriorating, so it's becoming clear that an implant is the way to go.

Cranial surgery on my 3yr-old. Fantastic. How do I explain this to her? How do i tell her that they're going to put something in her head to help her hear without scaring the daylights out of her? She's aware enough to be frightened by new things, strange things, things she doesn't understand, people she's not familiar with, so I really need to discuss this with her, I can't just send her off to surgery without telling her something about what's going to happen. She knows her left ear is quiet, she knows it doesn't work like it used to. A few delicate conversations coming, methinks.

I think I'll do the other appointments as separate posts...

Next appt: Mon 12th May Paediatric Dental specialist for Jonica. I will explain...