I worry about meningitis which can happen with CI. The implant also is irritated by my glasses. I do not want any surgery again but I don’t want any other issues. I am also left now with numbness on the CI side, loss of taste and an increase in tinnitus. I am also aware ins. co. will not pay for removal unless it is medically necessary. So I guess I am stuck with it.
My surgeon asked me to have the Pneumococcal vaccine (Prevenar 13) prior to the operation on 18May 2022 , this would immunise against any chance of getting Meningitis , and any nasty bugs such as staph etc during the op.
My op was successful with no complications , thouh I did have slight bleeding from my implant ear and took 3 weeks to stop.
Maybe you could ask your doctor about this .
I had to have two different vaccinations pre surgery. One for meningococcal and one for pneumococcal vaccinations. I can’t remember which one, but one was a 2 dose vaxx 8 weeks apart. The other was just one vaxx.
I also got told I need these vaxx every 5 years. So that 2 years to go still.
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The cause of my single sided deafness was my first ever vaccine for flu. A very rare side effect according to CDC .There were 350 reported cases of SSHL the yr. I got my vaccine. The reason I do not get any vaccines.My reaction was reported by the hospital where I received the vaccine .to vaccine adverse reporting system.(Employee health dept)
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Wanted to share my scores. You all have been most helpful. Pre op 1%,6mo post activation 18%,1yr 17%. reprogrammed went to 44 but at 14 mo dropped to 7%. reprogrammed again but have not been tested since then.This was only for sound never had any real word recognition despite wearing it 12/hrs a day. Perhaps you can see my frustrations.
I would recommend Auribus (iOS only it seems) for rehab; I just read an article on their site that discussed the benefits of rehab Auditory Training with Auribus: Maximizing Cochlear Implant Outcomes | Auribus Labs
Apologies for dredging this up. But is the goal of the auditory training to be able to understand speech without needing captions or lip reading? So you watch Netflix, listen to audio books etc etc seeking clarification until your word recognitions scores are solid?
When I got my first CI on activation day all I heard was screeches and scratches. Some people hear speech they can understand but not everyone.
The learning how to learn comment is individual. Some people learn from reading, some visual and other are hands on. I am sure there are more ways I don’t know about.
For me listening and reading audiobooks only frustrated me but for others it works great to help learn what all those screeches and scratches are. I personally watched old TV shows I knew by heart with a TV streamer and closed captions on. For me this proved an excellent way to learn these new sounds
To answer your question, when you hear well you don’t need to lip read or use closed captions. Many of us have accepted these tools to help understand speech for so long it’s difficult to even remember not using them.
A good example of what CI has done for me is my speech has actually cleared. Before the CI’s I slurred words, didn’t even know I was doing it. Punctuating consonants and vowels that I can now hear. Something else is a learning how to pronounce words properly.
New CI hearing has been an eye opener.
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There a lot of posts here and all are missing some details that would be helpful.
What CI system did you use?
What electrode array was selected?
Did you have a CT scan afterwards to determine whether there was any translocation?
I’ll add another on rehab. How did your own voice sound and is reading out loud a useful way to add to your adaption to the new stimulus?
I am finally scheduled for surgery in 2 weeks. I am planning to use MED-El and IotaSoft insertion device. Don’t know what array will be used but the plan is full insertion.
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I went with Cochlear America.
The CI612 array in both implants. I use both the off the ear and on the ear processors. I use Android phones without any other devices with excellent results.
I have not had a CT scan on the implanted array to see if anything has moved.
My rehabilitation has nothing to do with audiobooks or reading out loud. I used the TV streamer and closed captions. I hate to read.
@Dani might help you with MedEl, he is bilaterally implanted. He did a lot of research prior to his surgeries.
Def go with full insertion. I had AB with slim J array. I am not certain about a ct scan. They may have done something during surgery, but I was out. Had it done at Vanderbilt, which is a leading CI research institution, so I imagine best practices followed. My voice sounded odd, but absolutely reading aloud, listening to everything, audio books, etc. I have bluetooth to the CI and HA and it took a few months for the CI ear alone to be clear enought to understand books at regular speed, but I am there now.
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I have great results with my CI, however I still lip read and use captions - we watch a lot of British shows and the accents add to the challenge…plus my husband is now so used to them he prefers them. lol I can get enough without them on American accent shows, but TV sound is often lousy. Bought a new TV - Sony Bravia OLED and it’s got much better sound without a sound bar.
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Well I want to provide an update on my CI experience to share with all who have helped me with this decision, in particular @Dani who provided a lot of detail and used the same CI that I selected MED-EL.
My surgery was on Jan 19 so I am 5 days with the implant. My dr and I elected to go with the Flex28 array based on the pre-op CT that was fed into the ME Otoplan software. The goal with Flex28 was to achieve as deep an insertion has safely possible without running into the end and damage at the apex which would have resulted in a loss of residual natural hearing.
The surgery was ~ 1 1/2 hrs under general anesthesia. They attach facial nerve electrodes as a precaution against damage to facial nerves during surgery. The actual CI electrode insertion was done robotically through the round window with a new device that feeds the electrodes in at a much slower and more uniform rate. Insertion went without resistance or problems. This took 2 minutes vs the normal 30-45 seconds manually.
I was given an ear protector to wear for a day or so, esp to help when sleeping. An unexpected result I experienced was a numbness in the top of my ear which is the result of cutting the nerve to that in order to insert the implant. I understand this will come back over the next few months.
I will have a new CT scan done on Monday to assess placement of the array and this will again be inputted into the Otoplan to adjust the frequency mapping that helps at activation. It would also show whether there was any translocation or tip folding of the electrode array.
Other than a feeling of fluid in my ear, and a string plucking like sound when I tap my ear, I have no pain. I also have little residual natural hearing in that ear right now. Whether this is permanent will be determined as I go along.
Thanks to everyone who have posted their experience. I will update this after activation so that others can understand better what they can expect to experience in having this done.
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Thanks for the very thorough update.
I see you having great success with your new CI.
When is activation scheduled?
Both of my CI surgeries left the top of the ear a little numb. For me this numbness lasted about a year.
The liquid in the ear affects went away after a couple weeks.
You didn’t mention taste changes. That’s good if none. Both of my implant surgeries left me with a metallic taste for 3-4 weeks then went away.
Congratulations, welcome to the gang.
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Rick,
I can’t say I have noticed taste changes and had some spice food last night.
Activation is Feb 1. Just over 2 weeks.
On the liquid in the ear sensation, I notice that when I bend down even a little my ear quickly feels full or plugged. On straightening up it subsides. I am assuming this is fluid.
They prescribed Prednisone for 5 days and I am through that. Assume this is for inflammation in the inner ear.
Will be quite interested to go through the activation exercise and compare pure tones in each ear. I assume that will tell me something about how well the electrodes for that frequency match up with the tonotopic layout in my implanted cochlea.
Very normal, not to worry.
A little dizziness is possible. My second implant had this issue about 4-5 days after the surgery. I was afraid of an infection but was nothing. That lasted about a day at most.
I am sure you are up on what to expect at activation. Just try to remember we are all different. Try not to expect speech understanding at activation but if you do, excellent.
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I am looking at this whole experience as learning exercise. As a technical guy I over prepare and ask a lot of questions about why things are done. I opted for the longer array because if my natural hearing continues to decline or I lose it up front, I want to be able to have the benefit of the CI based hearing over as broad a spectrum of sound as I can.
I also expect in the future sound processors and their software will improve, but the array once implanted is fixed.
Everything is manageable at this point 
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Thanks @jcech for the info. I have been researching CI`s for a long time and also have been looking at the University of Iowa , and Iota soft system with robotic insertion. I also have been looking at Vanderbilt in Nashville. . I am pretty far away here in Florida but willing to travel for the right clinic and surgeon. I would have to investigate air travel after implantation as I am pretty far away.I am very interested in your experience and progress. Thanks for posting.
I would be going to Vanderbilt Uni. Even downunder we have heard of Vanderbilt and their expertise in CI’s. Generally speaking unless you have surgical complications (very rare) you only have 1-2 visits with the surgeon. The rest of the year you visit your CI audiologist. I’m sure you fill find them in your area.
Good luck.
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That`s amazing that you have heard of them being so far away. I know they are among the best in that field. Thanks…