I had my CI surgery on February, 20th. In this topic you find a short diary since the past half of the year concerning my CI.
This is Dominik, born in 1974 in Munich, Germany. I have been wearing hearing aids since I was 4 years old. At the beginning I was moderately to severely hearing impaired, since 15 years my loss is severe to profound. My speech audiogram with hearing aids gives 55% my audio audiogram shows a loss of 87%. The hearing loss is low in the low frequency range, my hearing in the high frequency range is no longer available. My last hearing aids are Phonak Naida SP. In addition to the hearing impairment, I also suffer from visual impairment.
My ENT has been recommending the step to a cochlear implant since 2016. I always knew that it was a major surgical procedure that could also result in deafness. Since I loved listening to music, I always refused to take this step. In order to enable the best inteligibility I have adapted the hearing aids myself for several years. The Naidas have achieved the best possible result and still have a lot of reserve in their performance so the ultra-power variant brings me nothing.
In particular I have searched and read experience reports, the most interesting one comes from “texboydmoore”
My listening curve on the right and left in 2019 was as follows:
dB/Hz 10/125 20/250 35/500 60/750 80/1k 90/2k -/>3k
In July 2019 I realized that the hearing aids are no longer more adjustable, that I am at the end of my hearing aid career. All frequencies are set so that they do not just reach the pain threshold (UCL). That is about 100dB across all frequencies. Silent sound is set very strongly so that I can hear the “high”-frequency speech component at all. This means that the usable dynamic range in the language area is very low due to the principle. In addition I rely on almost the strongest frequency compression of this hearing aid, because I haven’t heard anything above 2kHz for a long time.
A contribution from Sheryl gave me the decisive kick:
Although I am very hard of hearing I have always relied heavily on hearing because my eyes are of little help in my movement. If I have to learn all the sounds again especially those in traffic then that’s a massive problem when you can’t see anything anymore.
Because I don’t understand spoken language very well I have withdrawn to enjoy music. Because that was not exhausting it was beneficial. So music was just my escape. In fact personal contact with real life persons is very important to me. Therefore my attitude changed very quickly from a tacit attitude to an unconditional desire for a CI.
Choice of clinic and manufacturer
In Germany there are a few very large and many small clinics that implant a CI. Hannover (“CEBIT”) is by far the largest clinic in this country. Getting the CI is not enough to stay in the clinic. Several adjustments follow over the years. If I choose Hannover I have to plan several days for each adjustment. So I looked for a large clinic in my nearby. Since Munich is also one of the largest German clinics I decided to do it there. The journey takes about 1 hour and is closer than my daily trip to work.
It was very important to me that the surgeon has a lot of experience. I have received a recommendation for one and the same person from all over Germany independently of one another. So I chose this person. The disadvantage was that the waiting time will be correspondingly long.
As manufacturer I relied on the surgeon with whom he has the most experience. In my case it was Med-EL. Since each manufacturer has its individual advantages and disadvantages this topic was done. I then had the choice of whether I would like to use a hybrid system (EAS) or whether I would do without it. EAS = electric acoustic stimulation, i.e. stimulation of the auditory nerves on the one hand electrically by the CI in the high frequency range and at the same time acoustically by the hearing aid and eardrum in the low frequency range. The decision is important in case of Med-EL before the operation, because a short or long electrode is used accordingly, which can be inserted far into the cochlea in the low-frequency range.
Even before the operation my hearing loss was borderline for the low frequency range (> 60dB @ 750Hz). My surgeon estimated the probability of losing residual hearing while using EAS at least 20%. That was too much of a risk for me that after the operation I would not hear either acoustically or electrically in the low frequency range. I chose the long electrode. If there are still hearing residues after the operation the external sound processor (SP) can still use EAS. The probability that this will work is significantly lower at 50%.
Day of the surgery
On February 20th, 2020 the time had finally come. I have received a CI. I hadn’t been allowed to eat or drink since midnight. Anesthesia started at 7:30 a.m. I woke up at around 1:30 p.m. I felt that I urgently needed fresh air and took off my breathing mask. A carer brought me a glass of water and I was reassured. When I was back in my room I was instructed to drink at least 2 glasses of water within 2 hours and keep it to myself. Only then was I allowed to eat dinner at 4:00 p.m. Despite the early hour I was hungry for bears.
Before the operation I had a slight tinnitus at about 103.5Hz in my left ear. The surgery was on the right ear and the tinnitus in the other ear has been gone since then. In the first night after the operation I had ear noises on the CI side. Strictly spoken that was the sound of a V8 engine. Two nights later this too had disappeared.
The operation itself went very well. The facial nerve has been fully preserved, the sense of smell and thus taste were still there, the sense of balance was largely stable. I am very happy about the latter, because I cannot compensate for balance fluctuations with my eyes. I needed pain medication twice a day in the usual dose in the first night. On the second night I just felt the pressure bandage on the ear cup was too strong. The scar has become very good according to my ENT specialist who specializes in CI.
Waiting time for activation - worst time ever
I was aware that I could lose my hearing with the surgery and I’ve lost it. The loss however burdened me far more than I feared. Because that suddenly made it clear to me how much I had compensated for my poor eyesight with hearing even though I am extremely hearing impaired. I immediately found sources of noise through spatial listening. Now I have to search for several seconds from where someone is talking to me. This is very depressing because I don’t understand anything for a long time. Furthermore understanding collapses dramatically when more than 2 people speak at the same time. This was not the case with 2 hearing aids. This realization hit me hard because I didn’t know it beforehand or because it wasn’t cosciously enough to me.
But from day to day I was able to come to terms with it more and more. However a meeting with several people is still impossible. Constant reading is exhausting in the long run if you see poorly anyway. Listening to audio books with one ear was too risky for me to overload it. Music with one ear is only half the pleasure. So only my job remains in my profession. In my job it is not a problem that I had the operation. So it was no problem to work again just 1 week after surgery.
Nevertheless the announced 4-6 weeks until activation are long! After almost 3 weeks of waiting I surprisingly received an early appointment the next day. A personal contact helped me, for which I am very grateful. Because that was my salvation. Every day that I didn’t have an initial adjustment my headache got worse. The reason is that my jaw muscles were unconsciously very tense and I always had to relax them consciously.
The first adjustment was on March 11th, 2020, almost exactly 3 weeks after surgery. In addition to formal matters and handover of the hardware the sound processor (SP) was adjusted - the main reason for an activation appointment. For each of the 12 channels I should indicate as soon as the sound is too quiet and when it is in the comfortable range. The upper limit was not determined. A subsequent hearing test only with the CI showed 20% speech inteligibility at 65dB and 40% at 80dB. Tone audiogram with CI is between 45dB and 70dB so the result of the speech audiogram is understandable. Based on my many years of experience understanding numbers is very good at 90%. There is no residual hearing. Contrary to what has always been said voices do not sound like Mickey Mouse but like Benjamin the Elephant - much too deep.
The first subjective impression is: With the combination of CI and hearing aid I understand better in a quiet environment straight away than with 2 hearing aids before the surgery. We have not measured whether this is actually the case. Understanding solely with CI is almost impossible.
But the sound surprised me. At home on my piano I was able to clearly assign the keys C1 (32Hz) to C6 (1045Hz) with the CI. “Sound” is something else but that would have been too much of a good thing. Above C6, I can hardly tell the key tones apart with CI. With the HA-ear it works wonderfully up to C7 (2090Hz), I hear nothing more above with HAs. Although I perceive the tones far into the bass range it is clearly too quiet. Especially compared to the ear with my HA. As a result low-frequency noises from the right are masked out from my brain since the left ear dominates.
It has definitely improved that my cat no longer sounds like a raven but miaows - just like a cat does However this disappears in the structure like that of a wind chime which I now hear permanently due to the CI.
Life goes on
Until my decision in July 2019 I had the attitude that I was listening well enough. Until then I hadn’t noticed that friends and family talked to me less and less. But objectively that’s how it is. Since my decision I have been increasingly concerned with myself I read every conceivable article on the subject of CI I no longer notice when my loved ones are doing badly.
And yet my relatives are glad that I have finally dared to take this step. In retrospect I have to say that I am very grateful that my family and closest friends have given me an incredible amount of understanding over the years and, right now, with my single sided deafness, they also care about how best to place myself with them. After everything I’ve read in the past few months this is anything but self-evident because my few work colleagues also help me to deal with the new listening situation.
Now it’s up to me to get the best out of it and to practice well.
https://youtu.be/iOyleR-jQGk - Life goes on
I get the feeling you are not as happy as expected about your CI. Am I misunderstanding?
It’s been 7 days since activation. From reading you should see many more improvements in time.
When is your next doctor appointment for more adjustments?
I hadn’t much expectations before the surgery. I knew there will be the time when I must do the step. The only time where I was disappointed about the improvements was just after the OP when I realized that not hearing any more on one side is worse than expected. But that’s only a matter of time until the activation. I am no longer disappointed any more.
My next appointment will be next Friday on March, 27. Hopefully that it will not be cancelled. Now I wear the SP since a week and I think I can tell the audiologist what to change (I was not able to do that the day after the first appointment). I didn’t want him to set the default volume too loud because of my experience with my HAs. Actually it is too silent. I know what I could expect after the first appointment and that has outperformed. No, I am not excited but I am happy with the result
You will likely see an improvement after the next appointment, I know I did. Part of that is that your ear continues to heal for a while, but I also think they set things up very conservatively at activation to give the auditory nerves and brain time to adjust.
That sounds much better. My German/English is not so good.
It good that you see what’s needed. That should help at your next appointment.
Thank you Pat! Indeed it was me who asked the audiologist to reduce the volume. During activation I had to place my finger onto a diagram to show whether it is silent, ok or too loud. During this session I didn’t say any singel word. Then I should say anything and that was very loud. Probably that was just the first impression because I didn’t hear high pitched sound for a very long time - I was not used to it. It was loud but retrospective it did not even hurt like it does with my HA at the same sensation of loudness. Maybe I was just too frightened.
I wrote the diary in german first and then translated it sentence by sentence. (Google-translate is sometimes very funny so I can’t rely on that). I don’t believe you want to read the original
And it’s true, for me it is difficult to write down my real feelings - independently whether in english or in german. I do my best but I can’t prevent errors while describing my thoughts.
I just read your story and you are a person of great strength and courage. It shows that you have the fortitude to push on and face the challenges. I am very impressed.
Also, with all that is going on and the long time until your next appt, possibly you can have a tele-visit and they can adjust remotely. I work in IT so am intrigued by all the possibilities (although I think nothing replaces a face to face appt. with a physician) with tele-medicine and especially with HAs.
At this point none of the CI manufactures support remote adjustments. I imagine it will be coming, especially now, but the approval process for changes to CIs is much greater then for HAs so it will probably be a while.
Dani, I’ve just read all of your journey so far, what an amazing start It’s been for you. It’s not easy, and takes huge amounts of courage to do what you have done. Every mapping will make a big difference to your comprehension of environmental sounds and speech. The most important thing I found was doing the continual hard work at home. Sometimes finding the time is difficult, so I locked myself away.
I’ve gone 9 months now, and the most difficult part for me is not being able to get any Sort of balance between CI & HA. As here in Aus I have to have 2 audiologists, 1 for each ear. And neither do adjustments to the other device.
I’m thinking of ditching my EAS and trying just the straight CI. Because at 9 months I’ve still got very distinct robotic speech. I don’t know if that will help or not but it’s worth a try.
Good luck for the rest of your journey.
Thanks Deaf_piper, it were you who gave me the starting shot for my trip to CI. What I am doing is just following your way
I don’t need a second audiologist for my HA because I diy. On the other hand the highs in my HA are way too low compared to the CI. The lows in my HA could be turned off completely but still be too loud…
@Dani over the last 9 months this community has had several head down the CI road. The nasty stigma to moving forward and getting a CI is still around though. Which saddens me greatly.
@Dani thanks so much for sharing the beginning of your journey with us all.