Hiccup

I have been having problems with sensations in my head, when I should be hearing sound. Some frequencies have inverted which means basically I have little range in frequencies. I am only running on 10 out of a possible 22 electrodes as the rest of them seem to strike a nerve and cause a bodily sensation such as mild dizziness and pecularily, a vibration on the head.

Last Thursday I was informed that the surgeon, CI team and Cochlear Corp. agreed that I was having irregularities in my progress. That was a disappointing surprise. I am going in for a 3D CT scan early on Tuesday morning. This will tell the team the precise placement of the array and its existing devices. It seems the array is not hugging the cochlea curve as it should. There is also suspicion that the array went into a nerve pocket or is touching where it shouldn’t be.

The team are also mystified at how little my residual hearing was unchanged post surgery. This adds to their concerns of the array placement. I was told prior to surgery that once the surgeon enters the cochlea part of the ear, it is difficult to see exactly where the array is going because of the curve of the cochlea itself. Take a look at this 'at' sign: @, which is like the shape of a snail. That is similar to the shape of the cochlea. Imagine where the array needs to go - inside the tiny opening and around.... It is a tricky process that requires crossing the fingers in hope that the remaining hearing will not be damaged. Researchers, scientists and engineers are continually working on making the array as easy to insert and as atraumatic as possible (in other words, less traumatic to the structures of the cochlea.)

There is hope in this: if I am re-implanted, I will have improved hearing progress and that will be easier on me and the CI team. The mappings will be more realistic. That is encouraging given the situation I face because I thought I was doing well even though the audiologists were having a time trying to make things work for me! I had nothing to compare the CI to and summed everyone’s experience as being unique. I still continue to wear the processor as I enjoy some of the crisp sounds and along with the hearing aid in the left ear; it feels as if I am wearing 'two hearing aids' which is good enough for now. I thought that these annoyances I was experiencing were temporary, rather than unusual, as there are symptoms such as head noise, echoing and other oddities that fade away with time.

The surgery team has done re-implantations before for various reasons and I am assured that the second time around is a much simpler process.

This hiccup is a nuisance, but fortunately is expected to be a temporary situation.

Update: I am getting weary with this persistent side effect of feeling a buzz and have opted this afternoon to cease wearing the processor until the issue is resolved. I'm back to wearing my HA's in the interim.

First week back at work - a mouse!

I just awoke from 10 hours of sleep. I found the first week back to work exhausting. There are new sounds to hear and my both my ears and eyes are constantly following them to connect with what they are. Daily I have a nap after work. I keep telling myself I need exercise to wake up but no, I cannot seem to do that as my eyes need to close for a while.

I am still fascinated that there is an ability to hear distinct sounds in a room of noise. A small child at work likes to cover his mouth and say "uh oh" in a quiet voice. I never knew he was saying that, I only saw the expression with his hand. There have been discoveries - I'd never heard the public sound system in this school and it took me by surprise as I've been working there for two years now. Five years ago I worked at another public school where I would hear the announcements (of course, never could understand them) but I had forgotten about it.

A couple of people told me that my voice sounded less nasal, particularily in one program I was using at the time. That was interesting to me and I would like to be made aware of it if I am talking to you. Thank you for your support!

Today I will be downtown working with the audiologist and tomorrow I shall begin audio-therapy. I am curious and eager to get at the therapy. I have been exploring the audio-therapy sites on the computer and look forward to some guidance from the audiologist on how best I can use them. The link is to the right, in CI Hear. Click on Audiotory Therapy and that is where I have been spending some time these last few days. Monday night I was checking out the links for animal sounds and came upon MOUSE. Curious as to what sound a mouse makes, I listened to it. It is a clicking sound. In timely fashion, my sister connected with me, curious as to how the first few days back at work was going. I directed her attention to what I was doing on the computer with animal sounds and asked her, "Does a mouse actually make a clicking sound??". She said yes, she had to get a new mouse because the other one was much too noisy and the one she is using right now is much quieter.

I dont think we were talking about the same thing. Now who is the brighter one? ;)

My shopping adventure

This brain and body of mine has been wrestling with the vast array of foreign sound and vibrations. As I feel tired and 'disconnected', I have managed to keep myself as neutral as possible. I have three different programs in the processor to experiment with(also known as: P1, P2, and P3) The audiologist made a suggestion as we finished the monumental week-long programming session: he asked that I focus on one program, and allow it to sink in for a day, then do a rotation of programs in the following days. Saturday I stayed home using program 1 (P1) and took it quite easy, being attentive to human voices and allowing the brain to work through the echoing and squealing sounds. I did marvel at the few 'words' and some environmental sounds that were emerging through the cloud of noise.

My kitchen is the most uncomfortable room in the house as it echoes and booms sound inside me. (There is no cushioning or soft material to absorb sound.) For that reason I hesitated going to Safeway this afternoon. I will close the blog entry with a copy of my sisters email that she wrote to others, and passed on to me, following my experience.

As most of you know, my mother is recuperating well from her hip replacement surgery here, at our home. My sister, Suzy, is learning about life with her very recently switched on cochlear implant. This afternoon Suzy emailed me short instant message emails on her Blackberry from Safeway. It has been very exciting and emotional. She doesn't mind if I share these messages....

1. I'm at Safeway. I hear music playing. I've NEVER heard it before.

2. I wish someone was with me - but then nothing changes at Safeway. The trolley wheels are noisy. Is there music in Safeway? I've heard it before at small stores, but certainly not here.

3. I switched the programs in the processor. I'm definitely picking up more in one program (P1), not the one I've spent the day with (P2). In P1, its very cool to hear separations in sounds: the announcements, then wheels, then a person talking. Not all muffled noise. Now I have something to share in my blog tonight, if I ever get myself out of the store! I'm lingering slowly aisle to aisle.

4. I just asked where the graham crackers were. The guy responded.... (Ahhhgggg, I'm gonna CRY. I'm so emotional and embarrassed!).... I heard his voice in the NOISY Safeway, I didn't even clue-in till a few seconds later. then it hit me that I heard a VOICE was being spoken! Ill get a taste again when I face the cashiers.

5. Ill have to start carrying Kleenex around with me. I don't have any right now. I changed back to P2 (less dramatic = less emotional).

6. Cashier was a new young girl I couldn't hear. Looked like she might be mumbling and a little insecure. I spoke with another staff member I know. I did hear her voice for sure. On home and to have girls unload the car. I feel a bit dizzy now. Time for some down time.

7. I see I spent 2 hours in Safeway? What an adventure.

8. I don't know if I can write in my blog tonight. I'm overwhelmed.

9. Girls are unpacking groceries while I lay on couch. So grateful. Still on P2, and am noticing my brain seemed to "connect" with it later this afternoon.

10. My headnoise disappeared before Safeway. Now it started up again. (Must be auditory nerve stress.) I thought music is playing in the house. K said no.

11. I planned to update my blog tonight, but that may be too much for me. I need to rest up for my first day back at work tmw.

Recovering

Its been a tough few hours.. Yesterday at noon I had to cut the mapping short. My body and brain screamed "TMI" (too much information) and I had to get myself home and straight to bed. The strange new way of listening is too much, too different, too much a barrier and I feel lost. I long to return to a feeling of world-presence. Im feeling better this morning, after much needed sleep. I am not as eager to put on the processor this morning... I like the quiet right now. I am tired of the head noise, and the bodily confusion. I know it will pass, I just have to get through it. The whole audible basis of perception is completely altered and life feels foreign in ways. When I finish writing I'll grit my teeth and put it on. I am hopeful that it will get better today.. I have a feeling it will, because as I lay in bed in stillness and quiet last night, I left the CI on to allow my brain to sort itself out. I felt a sense of calm coming into my space, which was oh so good. When I went to sleep, I took it off to allow the skin, where the magnet is that holds the transmitter, to recover.

I realize ever since i was turned on, my attentiveness to life in sound was on HIGH and I haven't had a moment of quiet until my body told me to stop.

Off to get ready to go back to the hospital. Its a slow and long commute. I may play music, or I may allow myself to attend to environmental noises. I prefer to take a quieter approach to the day. The last few days were filled with adrenaline in my body. I am relieved for the quiet state that my body is recovering in.

Two days - LIVE!

It has been quite a ride. I don’t even know where to start. Although I did some research, nothing had prepared me for the initial turn-on of the CI. I had a panic emotion when the sounds swirled in like helium from the computer database into the processor on my ear. I protested at the utter strangeness of the sounds with "I don't like it!"

These are the highlights:

A. I am having the most SURREAL experience. I think I have landed on Mars! It is indescribable. Good news is I am adapting quickly. My body is really reacting but I am making sense of WORDS (w/ lip-reading).
B. I popped popcorn and that sounded familiar, but with richness. I heard rain go plop plop on the roof or tit tit tit tit tit, not a blurry shhhhhhhhh. It is so defined. Enviromental sounds are increasingly ALIVE. All the while, I still get these weird body reactions. A "slow SHOCK" is about the best I can describe it.
C. The quiet is too noisy - I can't make sense of it. Noise jumps at me in quiet spaces. I can’t find it and am confused whether it is real noise or head noise. I do find solace on the street and let the city noise drown itself out.
D. I heard wet rubber soled sneakers walk by in the hospital hall. Now that was comical!
E. I have been listening to music constantly in the car on my commute. I am recognizing some tune and lyric distinction although parts are like fingernails on chalkboard. It can be grating and takes a LOT of perseverance.
F. I had an audiogram test to confirm my residual hearing was not lost post-implantation. This was proven true.
G. The first time I heard the toilet flush it sounded like Niagara Falls!
H. Kirsti offered me her MP3 player to try out with a head set and I can hear on it with the microphone. The doctor told me today that some recipients feel they don’t need the T-coil. This is encouraging as I've never done without a t-coil in the past.
I. Sometimes I had a hard time speaking.. my voice would echo or boom inside me. I often shared that I prefer to be quiet and just observe, to listen and be attentive.

I would say these two days have been overwhelming and requires perseverance. Tomorrow is another day at the hospital hooked up to the computer with the processor for some more fine tuning. I have clocked in 12 hours time with the audiologist and am grateful that he is able to spend lengthy sessions with me in patience.

I am back to wearing two hearing aids

I wore my hearing aid on the left side for a month while the implant insertion healed in the right ear. Earlier this week, as I was contemplating my eldest performing a lead role in an upcoming school play, I moped in the idea I would only hear on the aided side and miss more of her special moments. I decided to try the hearing aid in the implanted ear. I played a CD that I was very familar with and became enchanted that I could enjoy it like I used to many years ago. I watched some t.v. and noticed the words did not appear to be running together and that there was more pitch and variety in the sounds. I have not spent another waking moment without both aids ever since. I am sure I am hearing almost as well as I was 10 years ago. The 's' sounds have returned. There is no monotone in my hearing. There is no question IF I couldnt wear the CI, I can go back to the hearing aids. These couple of days I have talked on the phone to three people I am closest to and have had no trouble understanding. My special phone is designed to benefit me - I have a dual headset with a special amplifier and the volume is L-O-U-D. My confidence on the phone has returned - at least with familiar voices for now.

I think I am doing myself a benefit wearing the aid in the implanted side, as the nerve is once again active and I hope I adjust quickly to the activation moment on Monday. My biggest question is: WILL I understand WITHOUT lipreading? As I watched Lauren's performance, I did not understand anything but I could hear it. I began to comprehend that the sound traveling through my forever-damaged ears are what keeps me from deciphering words properly. The miracle of the cochlear implant is its ability to bypass the damaged part of the ear and process information directly with the auditory nerve. Apparently I might be able to distinguish voice from noise. It takes time and practice.

Yesterday morning my mother had hip replacement surgery. It was also her 76th birthday and she had quite a party - before her operation commenced, the O.R. team gathered around her and sang a rousing rendition of Happy Birthday! The doctor then gave her a '2 and a half pound weight' as a gift. This morning I picked up the phone and gave a call to her hospital room. I was delighted to connect with her voice, although very soft, and it was a miracle to be able to understand her in her groggy state! I heard her inform someone (in a sideways tone) that she was talking to her daughter in canada and would soon be saying goodbye. A soft and joyful tear ran down my cheek as it has been a long time since I had confidence to hear using the phone, especially to engage with my mom who is many miles away on a hospital bed.

Three more days to go and when I am ready for switch on, the hearing aids need to be put away. I must ask the girls to hide them from me - my audiologist tells me the brain needs T-I-M-E to learn the sounds off the processor. He suggested I give one or two months using the CI processor alone. This enables the brain a chance to switch-over and submit to the improved quality sound that the CI provides. In a month, when I try the hearing aid in the unimplanted ear, I may discover that the hearing aid sounds junky compared to the CI and decide to go without it. Every CI recipient has a different experience with a hearing aid in addition to the CI. Sometimes it supports their CI, enabling more directional support, sometimes it doesnt.

Wish me luck. I am more than excited although trying to be prepared for what could sound awful on Monday.

Its one week before activation day

This is the week leading up to my activation day. In other words, "the switch on" is soon to occur. On January 16th I will return to the hospital where I will be presented with my new processor that looks like a behind-the-ear hearing aid. The processor will rest behind my ear. On the processor is a short wire followed by a magnetic transmitter that will attach itself to the skull above my ear. The whole of two units (inner and outer) are in place and ready for switch-on. The audiologist will begin approximately two hours of programming into the computer. Somewhere along the way, it will be hooked up to my new device and activated. I am told I may hear noise, what possibly may sound like helium. I may hear static, or I may understand a word, possibly Mickey Mouse style. The Audiologist will talk to me, as well as others who are there to accompany me. I may not understand any words without lipreading. With time, it should improve. It takes hard work and practice. Each experience is unique for the CI user. I suspect my ear will go through an adjustment (and possibly an ordeal) after a period of hibernation. The audiologist has made a plan that I will return on the immediate days following the activation for re-adjustment or a boost in volume as the brain adjusts within 24 hours and is ready for improvements.

Since surgery, my right ear canal has now been liberated from a lifetime of wearing an earmold! It has been exposed in unexpected ways. The most significant is one of air moving into my ear. In the bitter cold it feels barren and unprotected. It protests with an mild ache. For 43years, my earmold had been an insulation of warmth day after day, sporadically bringing raw sores or infection from bacteria buildup. Sometimes the ear wax or moisture clogs the tube in the mold. That is now "No More!" as I will not require an earmold for the processor to work. The path of sound will not travel in the ear canal as before, but rather it will go through the external processor, up to the transmitter on my skull, activated by the computer chip with an array into the cochlea to (finally) where the auditory nerve sends messages to the brain. This will bypass all the damaged parts of the ear, (in my case, the cochlea with its weakened or missing scilia, also known as hair cells, that are responsible for sending information by soundwave to the auditory nerve.)

How timely it is that I have learned to knit hats in recent months and now wear my first couple of hats to protect my 'new ear.'

I am still experiencing new sounds traveling into the ear and tell myself I've had a "CI moment" but I thought "CI moments" were supposed to happen after its been activated with the processor. I am delighted by the residual hearing that I have in the operated ear and am quite alarmed that it is louder than I've ever known it to be. Yesterday's weather brought a downpour of rain. As I opened the front door to go somewhere, I was swept by the sound in my right ear; I heard the rain pelting down! I turned off the hearing aid. I closed and opened the door. I heard the difference in the unaided ear. In the car I was touched with emotion hearing the rain fall on the car. I anticipate that I will hear a fuller sound with my processor.

At the preschool where I work, I could hear the squeals or cries from the children, the musical bells that the children rang, a wooden rolling pin fall onto the hard floor. Wearing the hearing aid on the other ear was somewhat a nuisance because it is amplified noise and does not balance out sound when worn alone. I did better with it turned down a notch. As it is the first week back at work, I was overwhelmed by the one aided experience and felt exhausted at the end of each day.

I heard my daughter drop an item many feet away while we were shopping in Safeway. That was a surprise as it gave me a sensation of depth in hearing, rather than amplification. In the following moments, I realized in my aided ear, I am only hearing noise, likely a mix of refrigeration, fans and fluorescent noise. On the other side of my head, a slumbering quiet interrupted by a crash to which I turned towards and saw my daughter picking up the product off the floor.With hearing aids, there is too much going into my aids and I cannot distinguish the different sounds.

I wrote to my audiologist asking about my enhanced residual hearing. He prompted me several times in the past to be prepared that I would likely lose all residual hearing as a result of cochlear implant insertion. Upon hearing my experience, he states:

My interpretation is that your surgery was relatively atraumatic (i.e., un-traumatic to your cochlea). In other words, the surgery caused relatively little damage to the remaining structures in the cochlea (which is good!). Sometimes, when there is residual hearing after the surgery, the hearing at some frequencies is actually a little better than it was before surgery. This is probably due to a part of the electrode touching the basilar membrane, and causing some changes in the properties of the traveling wave, or the hydromechanics of the movements in the cochlea. It is my guess that the initial part of the traveling wave, between the oval window and the region where an electrode is touching the membrane, may be amplified, or increased in amplitude. Not sure if that makes any sense to you. Easier to explain in person, with a diagram. At any rate, it all sounds favorable.