Week 4

This is the fourth week after my initial activation and first mapping. I have not experienced usable or practical hearing in my left ear, but I have noticed improvements and signs of things to come each day. Here are some recent observations.

1. I only notice the sound in my left ear, when I turn off my hearing aid in my right ear. My CI processor is set very, very low. I was experiencing a high degree of discomfort with sound at my first activation and they decided to ease me into it. No matter how loud something is, I only hear it at the level of a cricket in the distance. Because it is so low, and because it is not identifiable, the sound just gets washed out and ignored. It’s kind of like a mild ear-ringing.
   
2. I can “hear” some things with my cochlear implant that I can not hear with my hearing aid. The word “hear” is in quotes, because even though I register a sounds, I can not identify them. Most everything sounds like a cricket or a clink.  Anyhow, I was talking to Mr S today, and I was telling him about my experience. He asked if I could hear the rain outside. I listened. I could not hear anything. I tried turning my hearing aid off, and sure enough, I could detect the sound of the rain. Sounds that are too soft for me to hear with my hearing ear are registering with my implanted ear.
   
3. Some sounds still give me a drowsy feeling. Though I have made vast improvements in my adaptation to the auditory nerve stimulation, I can see that I will need to go a little at a time. The feeling is much like being startled out of falling asleep. It is a sleepy feeling in general. I have had no more shock kind of pain because of sound.
   
4. The volume is so low, that I can not really evaluate the sound. Everything is just at detection level. I know if something is making noise or not, but that’s as far as it goes. I can’t tell what it is nor how loud it is without depending on my right ear.
   
5. Vanity is not an issue. I wondered, before getting the surgery, if I would feel like I looked funny or get stared at. I honestly haven’t thought about it at all, and rarely notice people noticing. I feel proud when they do notice.

On Monday, I will go in for my second mapping. My audiologist has moved to another clinic in the state of Rio de Janeiro. I will meet a new audiologist for this mapping. I am going to see if I can get the volume put a little higher than what is comfortable for me, and have the remote programmed with a little more freedom on the volume control.

I expect that once the volume gets high enough to not get washed out as irrelevant background noise, the CI will compete for my attention. This might cause some temporary difficulty in understanding conversation, but it will be a logical step forward.

God bless.

Now this is interesting: Cochlear Implant History

The discovery that electrical stimulation in the auditory system can create a perception of sound occurred around 1790, when Alessandro Volta placed metal rods in his own ears and connected them to a 50-volt circuit, experiencing a jolt and hearing a noise "like a thick boiling soup.”

Ouch. That’s a terrible mental image.

The first direct stimulation of an acoustic nerve with an electrode was performed in the 1950s by the French-Algerian surgeons André Djourno and Charles Eyriès. They placed wires on nerves exposed during an operation, and reported that the patient heard sounds like "a roulette wheel" and "a cricket" when a current was applied.

Ouch again. But, I have to say, I’ve heard that cricket!

Thankful

A Thanksgiving Day post, a day late.

Today I am thankful to God. He gave me life and called me to new life. I am thankful to Jesus Christ for forgiving me of my sins and securing the resurrection.

I am thankful for Dr Evandro Ribeiro de Oliveira, who performed my cochlear implant surgery, and all those who work at his clinic.

I am thankful for Rita, my audiologist who works at Dr Evandro’s clinic. She encouraged me to get the surgery.

I am thankful for Sonya who helped us through the nightmare of scheduling and scheduling changes the surgery

I am thankful for Vanessa, who did my first mapping and has guided me through the first few weeks of hearing rehab.

I am thankful to Brazil and SUS (One Health System) for providing the implant and surgery free of cost, for me and hundreds of others who needed it.

I am thankful for my wife Loaise who has been a daily encouragement and help. She has cleaned my wounds, washed my hair, and listened to my complaints and loved me so wonderfully.

There are many others for whom I am thankful, but I wanted to list a few here.

Rhythm with direct connections

Yesterday, for my daily half-hour experiment (That’s the time I remove my hearing aid and concentrate on hearing with the implant), I listened to music with the direct connection cable. I could not hear any melody, but I could certainly follow the rhythm of some of the songs.

Being able to keep time with a song means I am recognizing the stimulation more and more. It used to be just “white noise.” Now it is a little more meaningful.

Oh, and I am starting to notice the CI sometimes, even with the hearing aid on.

Happy Thanksgiving everyone.

A New Sound!

Yesterday, the way things worked out, we were not able to go home at the usual time. We were out until 8:30, so we decided to go to a local restaurant and order a Mexidão* for dinner. Once we arrived, we also decided to go in and eat there, instead of taking it home.

The restaurant is really just a covered area near a soccer field. The roof is metal. While we were waiting for our food, it started to rain. Not just rain, but a storm. The rain beat against the metal roof and I thought I was noticing something different.

I turned my hearing aid off and sure enough, I was hearing something. It was a humming sound. It was a “Fa” as in “Do, Re, Mi, Fa, So, La, Ti Do.” That’s a pretty weird sound for rain on a tin roof. It is, however, the first non-cricket sound I have heard.

As you can imagine, I really enjoyed the rain.

 

* Mexidão is a popular Brazilian night time food. It is a mix of rice, beans, cracklins, sausage, beef, eggs and collard greens. Great stuff. Do a google search to see a picture.

Video Games for Hearing Stimulation

With my cochlear implant, I am still trying my best to hear and understand what I am hearing, and hear what I am expecting to hear. This led me to an idea. First, I directly connected my CI processor to the laptop with the earphone wire. (For safety purposes the computer was on battery power. No one should directly connect to something that is in an outlet. There could be a risk of shock.)

Second, I loaded a little "shoot the balls and make them pop" game that has a predictable popping sound whenever a color match is made. I turned the music to the game off, and left the sound effects on. So the only sound was when one collided with another: Pop!

I played this with my hearing aid off and the only sound going in directly through my CI processor. This was my best "hearing" experience, yet, with my cochlear implant.

My next experiment will be with non-impact sounds. When I figure it out, I will post.

Program 3

I met with my audiologist Vanessa today. She set my CI processor to program 3, which will be the setting for the week. She told me I can adjust the volume as much as I like, but not to change the program setting.

What I learned today is that the settings are not progressively stronger or louder, but strategically different. Even the electrodes that are switched off (3 of them) are on, one at a time, throughout these settings.

Today I listened to the drum, the bell and the rattle again, with my eyes closed and with my hearing aid switched off. I was able to tell which was which. So, that is the first step to sound discrimination. I only knew which was which by looking and listening first, though, because they all sound like a cricket to me... just different crickets.

My second mapping will be in two weeks. This week I will spend a half an hour a day with my hearing aid off, so I can concentrate on hearing with the implant.

Waiting

Today I went back to Dr Evandro. He had to change the packing in the ear and make sure everything is healing up as it should. It is. The ear pain had gone away, but he wanted to cauterize the area again, so there is a little discomfort because of that.

Tomorrow I will have the processor set to level 3. I am so anxious for another mapping. I feel like it is a waste of time set on this low level. I wish I could convince them to set the mapping date forward a week. I am going to try my best.

Mister S and his daughter

Christian friends, please be in prayer for Mister S. His 8-year-old daughter is soon to get a cochlear implant. He has asked my family to meet with his to pray and study the Bible. Pray that they will give themselves to Jesus and be baptized soon. Pray for me to be a faithful witness.

I notice when I am wearing it, but forget when I am not

Yesterday, I got up and took a shower before putting on my cochlear implant processor. I put my hearing aid on to go to the bathroom, but left the CI for when I got back. I ended up forgetting to put it on before leaving the house.

I noticed that it wasn't there, not because of sound, but because of my reflection in the mirror. So, I made a note to myself to put it on as soon as I got back to the house. I got distracted, I guess. I ended up not putting it on until we were getting ready for the evening church service.

Once it was on, I noticed what I had been missing. Immediately. So, I am at the point where I notice when I am wearing it, but forget when I am not. I am looking forward to the next mapping. I believe it will make a big difference.

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Oh, and the ear pain is all but gone. The medicine and ear packing is working just fine. I will see Dr Evandro on Wednesday morning and the Audiologist on Thursday afternoon. I will have my processor set to 3. Then one more week to 4. The one more week to the second mapping.

A Little Post-surgery Ear Pain

I was scheduled to see Dr Evandro yesterday. I am glad I had the appointment set. I got an earache in my implanted ear. The surgery includes a cutting of the ear canal, but that part does not require stitches. It does need to be watch and, in my case, he did a little cleaning and cauterizing and packed it with gauze. I will leave the packing in until Wednesday. My ear felt better right away after the appointment.

I am noticing more sound in my left ear, but it is still like the sound of a cricket in the distance. I mistake it for ear-ringing most of the time. I also learned that 3 pairs of electrodes are not activated in my processor. The high pitch sounds bothered me the most during my mapping, so they wanted to wait until the second mapping to turn them on.

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While waiting for the doctor in the clinic, I struck up a conversation with a 48-year-old man who just had his CI surgery 2 weeks ago. He was happy to hear about my experience up to this point. I talked with the doctor and the audiologists at the clinic and got permission to look into forming an association of implantees. There are over 50 who have received MED-EL implants in Juiz de Fora. This could be a good thing at thing at the right time.

Second Meeting Post Activation

Today’s meeting was a lot less than I expected. There was no second mapping today. That will come in three more weeks. I guess I misunderstood. I also did NOT get permission from my audiologist to mess around more with my controller. I was told to leave it alone or leave it with her. So… My wife was right.

Today, Vanessa, my audiologist put my processor on level two. She then had me turn my hearing aid off and close my eyes, she played a drum, a cymbal, a rattle and a few other things to see what I could hear. The answer was the same for all of them… a little cricket in the distance. The good news is, I heard them all, except the rattle.

She explained that even though I don’t feel like I am hearing these things, that my brain is learning how to hear with my left ear, and that takes time.

It all makes logical sense…. I just wish there was a way to speed up the process.

5 Days In

Today is Wednesday. I have my next meeting with the audiologists tomorrow. I am excited about it for two reasons.

One, I find all of this fun and fascinating. This time, I will bring my son Nilson and let him enjoy it too.

Two, I (even though my wife protested) took my remote and played around with the settings. I put the processor on program #4, which is supposed to be for the forth week. I let it go for a little while, and with the volume on maximum. Now, maximum is actually pretty low, because of the way it was set at my first mapping, but it is much higher than the setting for program #1. The higher setting meant I was getting stimulation from a lot of sounds, so I was hearing lots of clicks. They were little, hard to hear clicks, but they were there. I also noticed that the feeling of the sound did not bother me much at all, unlike the first day. I really hope with the new mapping, I can get the power up a bit and see what else there is to hear.

I also need to get the permission of the audiologist to mess around with the controller more, so my wife won’t complain. (She loves me and does not want me to mess anything up.)

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As a side note, I still have pain in my left temple area when I open my  mouth wide. The doctor said to put a hot water bottle there from time to time and it will go away. I have yet to put a hot water bottle there. It is on today’s shopping list.

Did anyone watch any of the videos? You can comment on them in the comments section. I’ll post some more this coming weekend. An introduction of Dr Evandro and video of the second mapping.

YouTube Videos are Up!

Quick Links in Order:
1. Driving to the Clinic for Activation.
2. Arriving at the Clinic.
3. Going into the Clinic.
4. Entering the SUS Auditory Health Center.
5. Presentation of MED-EL OPUS 2 Processor.
6. Testing the Electrode Array.
7. First Activation and Mapping.
8. First Real World Sound Test.

The first few are short, the later ones are longer. There are a couple that still need to process before I can add the link.

Doctor Visit

This morning, I will visit Dr Evandro to get the plug in my ear removed and my ear cleaned. He was not available on Friday when my implant was activated. He has been very attentive and cautious to preserve my hearing in my right ear.

I have Enlarged Vestibular Aqueduct Syndrome. This means that I am prone to sudden deafness, and it has happened a number of times in my life. One of the causes can be a change in pressure in the head. Since I had a few episodes of severe ear-ringing after the surgery, he prescribed Betaserc. This medicine is used here in Brazil and Europe, but is not FDA approved in the USA. Many use it to treat Meniere's Disease and as a long term treatment for tinnitus. It has also been reported to prevent hearing loss in certain cases. I’ve been on it for a couple of weeks, and it usually starts taking full effect after a month of use.

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Several Youtube videos are up and my next post will be a link to those, along with a brief explanation.

A Sign of Progress

As I mentioned in the other post my cochlear implant is set to a very low power during this first week, so I can get used to the feeling of the auditory nerve stimulation. When it was set so that I could hear clicks, I also felt bad. So they set it low for me to get used to it.

I didn´t explain to Nilson, my 4-year-old son, that I am not hearing yet in my left ear. He loves the implant and the magnet on my head. He also loves coming and talking into my implanted ear.

Today, he came and said something to me. I didn´t hear it, but I did hear a quick quiet buzz. That was something... it was progress. Good!

The day after 1st activation

Still working on the youtube videos... slow internet.

I´ve been wearing my cochlear implant all day today. I like the way it feels on me. I actually like the way it looks, too. I keep expecting people will notice and comment, but not so much.

I can not hear anything with the implant today. I think the power/volume is too low. It has to be this way evidently, because I feel the stimulation before the sound, and it makes me a little uncomfortable. The audiologist said that I have to wear it like this for a while to get used to the stimulation so I can handle it when it is strong enough to send a signal that will be perceived as sound.

I am anxious to hear something, and I am not. I do feel startled when a door slams and such, but I don´t hear it. I just feel that the CI sent a signal. That signal startles me.

I haven´t heard from my left ear in 30 years... if ever. I know this is going to take time. Still, I really wanted to be hearing things already... anything. (I hear in my right ear with a hearing aid, but I mean with my left ear.)

Logically, I understand this process. Everything has been explained well. I know things are as they should be. Emotionally, however, I am anxious. I get scared that it just isn´t going to work.

Today I reflect on the wisdom of the wise teacher. Let me live well, even during the uncertain moments.

From Ecclesiastes

Everything in this world has its appropriate time, and everything its occasion.
There is a time to be born and there is a time to die.
There is a time to plant and a time to harvest.
There is a time to kill and a time to heal.
There is a time to break things a a time to fix things.
There is a time to be sad and a time to rejoice.
There is a time to cry and a time to dance.
There is a time to scatter rocks and a time to gather them.
There is a time to hug and a time to back off.
There is a time to search and a time to let go.
There is a time to be frugal and a time to spend everything.
There is a time to tear and a time to mend.
There is a time to be quiet and a time to talk.
There is a time to love and a time to hate.
There is a time for war and a time for peace.

God has given a time for everything. He put eternity on our hearts, and gave us a desire to understand why things happen, but he doesn´t let us know and really understand all the things he does.

Everything God does lasts forever.

So, of all that has been said, here is the conclusion. Fear God and obey his commands. That is why were were created. At the end of our lives, we will have to give an account to God for all we have done with our time, whether good or bad, even the things done in secret.

First Impression after Activation

My cochlear implant was activated about 5 hours ago. I am sending video to youtube right now and will post the implant experience here when it is ready. In the meantime, let me just write out my first impression.

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The biggest thing was that I did not really hear very much. I could feel the electrodes doing their thing more than I could experience sound. What I heard was kind of like a clicking, or a cricket, or maybe a blacksmith hitting an anvil in the distance. But, whenever they upped the power enough for me to hear, I felt a little dizzy, sleepy, startled and nauseated. Basically, I am not used to the stimulation. The volume/power was backed down a good bit, so I am not hearing much at all, but rather feeling the effect of sound. In a week, I will go back for another adjustment and again every week for a while. I think the hearing and hearing of meaningful sound will come a little at a time.

MED-EL has a great presentation of their product, the packaging and the supplies. I felt like a rich man with all the things I got. I’ll post pictures when I can.

I am happy.

Leaving in One Hour

In one hour I am going to go and pick up my son from the preschool and pick up my wife from work. We will go down to the Dr Evandro Ribeiro de Oliveira Clinic of Ear, Nose, Throat and Eyes. There, I will have my cochlear implant activated and the first mapping done. I will also meet with Dr Evandro, who did my cochlear implant surgery, and have the plug removed from my left ear.

Today I will get the processor that goes with the implant. My best understanding is that it will be an Opus 2 processor. Hopefully dark gray to match my hearing aid.

I have no idea what to expect, but I am pretty excited. I will video what I can and post it to youtube with a link here.

See you soon.