Assessment for Cochlear Implant - I'm a candidate!

Greetings all:

Yesterday was assessment day. We were up very early to make the drive to Toronto and arrived in plenty of time, which was a very good thing as there was a long line-up to enter the main entrance to the hospital that snaked well down the sidewalk. It was very intimidating to be standing in this line for a good 15 - 20 minutes with little social distancing when Toronto is at its peak with Covid cases. Needless to say, my stress levels were ramping up.

I found the audiology department which was an oasis of calm after running the gauntlet through the crowded hospital lobby. No wonder covid numbers are rising - but that’s another conversation. Because I could not bring my husband in to “hear” for me, I was assured that I could access WiFi in order to use my Live Transcribe on my phone. No luck connecting - and then I became aware that every staff member was wearing a normal mask, when I was also assured they would be wearing clear masks! Just then the audiologist came for me - in my angst I blurted out that I was completely unable to “hear” with everyone wearing regular masks, and I can’t hook up to their WiFi. I think I may have come on a little strongly, but she graciously reassured me that she would don a clear mask - it made all the difference. All this preamble is to reflect the times we are all living in while have to cope with our hearing loss.

We had a long chat ahead of the hearing tests where she asked a lot of questions about how my hearing loss was affecting my life. I imagine my earlier demeanor had spoken for itself, when she kindly inquired if I was seeking professional help for my stress. But I think we can all relate to the challenges of coping in a masked world on top of the challenges we already face as hearing impaired people.

On to the hearing tests. They were lengthy and took a lot of concentration. We always want to perform well - which is silly, becaused that is the reason we are there. I tried so hard to repeat words and sentences - often guessing. The results reflected my other two tests over the past year, with just minor variance. Speech on the right: 12%. On left 40%

Back to her office, where she confirmed that I was a candidate and continued on to explain how an implant works etc. All things I already knew thanks to the research I had done in advance. I cannot stress enough, how important it is to inform yourself. There is a wealth of information out there - as well as this wonderful forum and others. Health care systems may vary between countries, but the CI products and surgery is common to all.

I was surprised to learn though, that I had gotten ahead of myself in thinking it was up to me to choose which implant company to go with. That, under Ontario’s healthcare system, is in the hands of the Implant Team. She said, that while they use AB, Cochlear, and Med-El - the surgeons favour Med-El and said it was most likely the one I would be implanted with. Ironic, as I had already turned away from that company because of rechargeable battery life, and the fact that they don’t seem to be as up-to-date with streaming technology etc. What is in their favour, though, is the MRI compatility which is important to me. (I do see that Cochlear is now also promising 3T MRIs without magnet removal, but not AB) Anyway, all that is yet to be determined, so choosing the external processor will have to wait. The audiologist was really in favour of the off-the-ear processors as well - another thing that I had rejected because of fear of losing one. So I will likely have questions for the forum about the pros and cons before I make my decision.

Two hours have elapsed and now I had one more test - a cognitive test. Oh, easy peasyI thought - I have sat in on these several times with my elderly mother as her dementia worsened. Oh dear … they were much more involved, though they still included the classic drawing of a dial on a clock, remembering a group of words. However, by that time I was pretty drained and I hit an embarrassing wall when I was asked to start at 100, and go backwards subtracting 7 each time. Math is not my strong suit to begin with, but by the time I got to the 70’s my brain froze. She assured me I did fine and this exercise was for research purposes only, and they would test me again about a year after the implant. Finally I was finished the assessment. So, this morning I woke up with a splitting headache. As I laid there contemplating getting up, I tried the math exercise again - I did fine even with my head pounding! Whew, that’s reassuring.

I have another appointment April 30 for balance tests and possibly another CT scan - I did question if I needed another as I just got one in January - so they have to check on that with the surgeon.

One snag, as I proceed, is the timing of the meningitis vaccines which I understand have to be spaced at least 8 weeks apart. I have already received my first Covid shot, and was scheduled to recived my second one last week. However it got cancelled, and has yet to be rebooked, when Canada made the decision to space out the first and second shots to 16 weeks – a very big gamble and due entirely to a botched procurement strategy which left us with a very slow rollout. This means I won’t get my second shot until late June, then will have to wait a month before starting the meningitis vaccinations. Sigh. So it looks like surgery will have to wait until October. I just hope it is well before the snow flies - as it’s an 1 1/2 hour drive to the hospital!

Thanks to all who have answered my questions. You have all been a great help, and I hope to pay it forward. Cheers.

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I think you should be able to shorten your timeline. I believe you only need 2 weeks between COVID vaccine and other vaccines so you could get a meningitis vaccine now, COVID at 16 weeks and 2nd meningitis shot 2 weeks after 2nd COVID. I think that should put you sometime in Summer.

Thank you for that suggestion. I had thought it was a month between the covid shot and other vaccines. I was afraid to go ahead with the meningitis vaccines and mess up the timeline for my second Covid shot. My husband was just at the vaccine centre today for his first shot and made some inquiries while there. He was given a phone number to our local health unit, where he explained the situation, and they are going to try to work something out for me. I am grateful for his advocacy, but I do look forward to being able to advocate for myself more in the future.

I can’t say for sure what Canada is doing, but at the COVID injection clinics I’ve volunteered at, it was a 2 week gap that was required between COVID and other vaccines.

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Will you get an appointment with the surgeon before surgery? We do in the the USA. If you do, that’s a good time to discuss which CI manufacture you will be getting and it might also be a time for you to air your thoughts about which one you like and why.

Congratulations on getting approval for an implant or is it implants?
The process can be overwhelming but it really is not. I hope you can relax about it now that you know.

Keep us posted on your progress.

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Thanks @Raudrive! Yes it is exciting to get this thing started. I will just get one implant for now, although the surgeon did say that I will very likely need another in the future. It this point, I would like to hang on to my natural hearing with an HA as long as possible. It frightens me to contemplate being utterly and completely deaf if I go with a second implant. But, I am certainly open to the eventual need.

As for a chat with the surgeon - I am still not sure when I will see him in person. I certainly hope so! I think there will be a pre-op appointment - but it’s likely decided already by that time. Interestingly, and I mentioned this before, that in my research I discovered that the only other implant program in our province uses Med-El as their primary choice as well. I don’t know if they favour that brand because they’ve been using it the longest, or if they consider it to be the best product out there. At some point, as much as I like to be in control, I have to accept their decision. I asked to audiologist to stress MRI compatibility as being my biggest concern. So, at this point, if they choose Med-El for me, I will be satisfied. @Syncros - after you telling me Sunnybrook chose AB for you, this was a surprise to me. @Dani - I will likely be asking more questions of you, if you don’t mind! Cheers!

I won’t mind. Of course not. :slightly_smiling_face:
Just ask anything you want to know. But don’t be surprised, I am around 9 hrs ahead from you

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@susanmarylynn Thank you for sharing your story. I am glad that I came to this forum and have learned so much about CI. I can totally relate to your experience with the vaccine schedule and choosing between CI manufacturers.
I went for an assessment at Sunnybrook in Feb 2021 and was told that I’m a candidate for CI. Although they cannot guarantee the success of the results, the audiologist said CI will help with my hearing loss.

I received my 1st meningitis shot in April 2021. At that time, I thought I would have to wait until I receive the 2nd dose of meningitis shot, then I could begin the COVID vaccination. But then I spoke with a pharmacist as well as the doctor who volunteered at the COVID vaccination clinic, both of them said as long as it’s 2 weeks apart in between two different vaccines and I would be fine (which is also recommended by Health Canada).
So here is what my actual vaccination schedule looked like: April - 1st meningitis shot; May - 1st COVID shot; June - 2nd meningitis shot; July - 2nd COVID shot. I thought that was crazy. LOL. The interesting thing is that my 2nd COVID, I didn’t experience any side effect, except for a very minor sore arm which went away within a day. Sorry, off topic here.

As for which brand of implant to get. I was told by my audiologist that the cochlear implant program coordinator would help me choose. But he would take note of my preferred brand of Med-El which is due to its reputation of being MRI safe. However, I was also interested in Cochlear’s audio processor Kanso 2 with its direct streaming capability to my iPhone without an intermediary device. Anyhow, the team at Sunnybrook has decided that I will be getting a Med-El Synchrony Flex Soft implant.
Based on my research, Med-El has innovative technology with their implant and electrode arrays. So I’m happy with their choice. But I still wish that Med-El’s Rondo 3 comes direct streaming capability.
My implantation surgery is scheduled in early August.

I look forward to hearing the update of your journey.

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Hello! Nice to hear from another Sunnybrook patient! I am getting my implant next Friday, the 23. I was quite shocked to get my notice the very day after I received my 2nd meningitis shot on July 5th, as though they were just awaiting confirmation. I had my pre-op assessment on the 15th via telephone, with my husband translating every word for me. I go for a Covid test on Tues, then Friday is implant day. BUT I still don’t know what brand of implant. I emailed last week and the response was that it hadn’t been decided and I should hear early this coming week.

I feel the same as you about needing an intermediary device for streaming with the Med-El implants. I am sick of wearing that thing around my neck. But, given you are getting Med-El and my audiologist seemed to be enthused about the Rondo 3, I am expecting to get a Med-El implant as well.

That said, when I did see my surgeon, he assured me that all brands were MRI safe now. I wasn’t sure I believed him and did more research to confirm that AB is now MRI 3T safe with their latest implant. It is actually my first choice now precisely because of its connectivity. Also, I need a new hearing aid, and AB and Cochlear have both paired with hearing aid manufacturers to produce a hearing aid that will “communicate” with the implant. That seemed to make sense.

Well, I have to trust the team. They must have their reasons for choosing one brand over another. My surgeon said they base it on the patient’s hearing loss. I have chatted with another recent Sunnybrook patient, @Syncros who received the latest AB implant and I think he got a paired hearing aid.

Right now I am swallowing down the anxiety, but I will post my experience as soon as I can after the big day!!

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Hello @susanmarylynn!
I’m surprised that you still don’t know the brand of implant you will be receiving. Do you have/use myChart? It is the electronic health record portal at Sunnybrook which contains all of the clinical notes, hospital appointments, and medical image records (MRI, CT Scan). If you don’t have it, I would suggest you contact the hospital and gain access to it. I found out about the brand of the implant that I will getting on there. Then I emailed the surgeon’s assistant and the implant program coordinators (either Luana or David) to confirm it.

Yes, all the latest implants that are being offered at Sunnybrook are MRI compatible. But Med-El was the first one that came out with the MRI-safe technology and everyone else just followed suit.
If you were to get Med-El, I think hearing aid can definitely be paired with the implant. But I’m not the expert. I believe your audiologist can answer that for you.
I believe the doctors choose the brand and electrode arrays based on patient’s hearing loss and the structure of their cochlea. I have been told by my audiologist that all brands yield similar outcomes. In my case, I need more stimulation in the low frequencies deep in the cochlea, hence, Med-El has the longest electrode array.

We are very lucky in Canada that our public health system provides high quality of care and it also picks up the bills.

Good luck with your surgery. Please keep us posted.

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Susanmarylynn I just want to wish you all the very best on the 23rd. Will be thinking of you… Good luck on your new hearing journey… :four_leaf_clover::four_leaf_clover:

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@Deaf_piper – thank you very much! I appreciate the good wishes.

Hi all -

Well yesterday went very smoothly at the hospital. Everyone was so kind. I ended up receiving the latest AB implant and I am happy with that. I like the processor design and it has great connectivity built in, also decent battery life.

I had a very rough evening with vomitting to the point of bringing up blood. My alarmed hubby called the hospital and the ENT on call thought it was likely blood that made its way through the sinuses, but to go the hospital if it continued. Oddly, I began to improve after I got that out of my system. The pain is very tolerable, but the dizziness is keeping me on the couch with hubby at my beck and call. Hopefully that will soon subside. I am glad to have it done, though and look forward to activation on August 19. I’ll report on how that went.

Thanks for all the support and good wishes! S.

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I’m really glad your hubby called. That’s why surgeons are on call (as well as doing emergency surgeries)

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Thank you MDB! It is always difficult to make such a call, but it did seem prudent and I was feeling too sick to make the decision myself. Feeling so much better this evening, hubby just took the dressing off and gently applied the polysporin as directed. He’s never been known for his nursing skills but he’s rising to the occasion!!

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Glad to hear this.
Did you figure out where the blood was coming from? Wondering if it was drainage from your ear canal.
When do you get to remove the huge cup over your ear? Seems different doctors have different guidelines.

I guess the doctor was right in thinking it had drained through the sinuses. I was told to remove the dressing today, there was no cup, just lots of thick sterile gauze kept on tight with a stretchy netlike band. The nurse who discharged me gave a little pack of more gauze dressing, so I will put that back on before bed. I have long hair, that is all stiff with whatever disinfection they must have used. I want to keep it away from the incision while I am asleep. I am quite a sight with the Medusa hair, and a big blue arrow on my forehead, pointing right, that won’t wash off!!

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Funny.
Is your hair orange? That was the color of the stuff they used on me. If I were 50 years younger it would be hip.

Ha, ha!! That would really be funny because my hair is silver. Thankfully it wasn’t orange. But they could sell this stuff in a hair salon!