Latest Update

Things continue to go well from my point of view. If I look back at the expectations I had for my CI, I have exceeded them all in a very short time! I was in Vancouver for business a couple of weeks a go and was able to set up an appointment to see my audiologist. It had gotten to the point that I was turning my CI up quite often so I figured I could use a re-mapping. We adjusted the volume on all 4 programs and that has helped alot. I am getting very close to declaring myself a normal phone talking person again. On Christmas I was able to talk to all of my sisters and brother as well as my parents for the first time in 5 years. It was great to talk to them and exhausting as well, but it is getting easier and taking less effort as I move forward. It really does seem to good to be true, I almost take my new hearing for granted but I don't. I do consider myself a bit of a freak, my CI grabs looks of bewilderment from most people. It doesn't help that I wear my hair fairly short so it does stick out and is quite noticeable. I think some people may think it is the latest in cell phone technology and they wish they could get one too. Nobody really ask me about it though, I think they may think I am sensitive to the issue but really I love to explain the technology to anyone brave enough to ask. So far this has been a blessing and I only hope it stays this good or keeps getting better.

New Words.

Time to update what is going on for me. Things have been going pretty good. I like to think they have been going very well as far as my new hearing is concerned. I continue to test the limits of this technology and come to grips with being part robotic. It really still amazes me that I have this tiny computer in my head that is giving me the ability to hear again. It is working well and I am thankful for it everyday. What I have noticed is that over the past 5 years I was exposed to many new words, be them names or just a word I never heard before I lost my hearing. On most of them I was pretty good at getting the pronunciation correct, others not so much. It is funny now to hear those words and say to myself, you dummy, you have been saying it wrong all this time and to boot, nobody corrected me. It's funny, I laugh to myself and add the "new" word to my vocabulary and move on. I have noticed my family is a little more relaxed in situations that before always had them on their toes. An example of this would be me conducting a conversation in a noisy environment, before my wife and kids were always there to catch me when I fell, now they have the luxury of being a bit more relaxed and letting me go it alone while they tend to themselves, I like it! My CI has giving me more freedom, I work at something new everyday and if it doesn't work today, I try again tomorrow because really each day it keeps getting better. I hope my next post is not so long away because I really like the use of this blog as a journal to document my journey and to have the ability to go back to see how far I have come.

Music to my Ears

Had my first month check up this week. Can't believe how quickly it has gone and how much my CI has had an effect on my life. My doctor is really impressed with my progress and was happy to have such a positive meeting. We did some fine tuning to all four programs and increased the volume just a bit which is normal for this visit. Told him I have been listening to radio and watching videos with my CI connected right to my computer and was able to understand most of what I heard. When I mentioned music is slow to come he gave me a couple of tips and set me free to come back in 2 months. I am supposed to listen to music I am very familiar with so I picked Van Halen Diver Down. An hour into my ride home I was singing along and listening to music for the first time in 5 years. Again it is very different than what I heard before but I am now able to listen to familiar tunes and its great! I have come to realize that I really missed music. It immediately brought warmth to my heart and a smile to my face and almost a tear. I got to thinking why I was so happy and had such a good feeling just by hearing music? I didn't think I missed it, it's not one of the things I wanted to regain. But then I realized a lot of my childhood memories are surrounded by music. My dad is an entertainer and he was always playing his guitar and singing. I guess it had an effect on me and I guess I missed music without even knowing it. I still have a long way to go but am happy with where I am after one month and can't believe that it is only going to get better!

Radio!

First off, been really busy so have not had as much time to dedicate to my blog as I would like. I have been getting along quite well for the past 3 weeks. My new CI has already really improved my life! I am able to carry on conversations in noisy environments, where as before it was a lot of faking it and hoping I got things right. I have put myself in many different situations just to test my capabilities and have been very happy with the results. The main thing my CI is picking up is voice, and that is all I wanted. I do hear a lot more environmental sounds than I used to but it's the conversations that seem to be much easier to follow now. Since the CI is so focused on voice it tends to cause a problem when in a crowded room with many people talking at once, but this is difficult for everybody so I don't feel as bad. The voice coming into my ear is still very foreign and nothing I have every heard before but my brain is adapting and making it easier to understand. My biggest success so far is listening to the radio, while I am driving. I have been able to follow what is being said and I love it. It is only talk radio because music is still just noise but I will take this and look forward to it only improving.

1 Week In!

Well actually it's a week and a half. Things are going good. I am hearing things I have not heard in a long time. Like the ticking of the clock in my office, how annoying! Voice is still a challenge and by challenge I mean it. It takes all my concentration to break down words that are introduced to my brain with this new sound. It should get easier as I go along because it has been 16 years since my right ear has really heard anything meaningful. I tried a movie with the kids on the last day before school started. In Kelowna here there is no rear window captioning (RWC) so movies are mostly just visual for people with hearing impairments. I did pretty good, figured I picked up about 25% of the dialog in the movie which is more than I was getting before. It was easier to follow what was going on, and I know this will get better. Didn't get the stereo effect because right now the 2 sounds going into my head are so different, maybe that will come too. Telephone is still difficult and at the present I prefer my hearing aid and we know how bad that is so I"ll keep working on that. Tried to listen to talk radio and had some success but tough to drive and listen at the same time. I know that sounds funny but it is one thing that we take for granted with normal hearing. Overall I'm pretty happy with progress and am seeing improvements daily so that is the direction I want to head in.

I'm Back!

Yes I am back home and really back in more ways than one. This may be a long post as I will summarize the week after Monday's turn on. Tuesday started with the elimination of one of the programs. The first 2 programs or mappings as the are called were very basic and an introduction to my new way of hearing. They were to determine at what speed my ear was more comfortable processing this new sound. We eliminated the slower one and added a quicker one on Tuesday morning. We also added a program called ADRO which is supposed to automatically adjust to keep sounds at a comfortable level for maximum clarity. We entered this program based on the mapping of the before mentioned program one. I should mention at this time things are going pretty well. I am still only using my new CI and the clarity of voice is excellent. I can't believe that I can hear people talk so soon and my doctor is impressed with the early results. At the end of the day we do a speech test and we have promising results. We conducted the same test with my hearing aid last spring and of 50 words listed I was able to correctly repeat one of them. On Tuesday afternoon, with only 2 days of my new CI, I was able to repeat 26 words! Very exciting and promising as it should only get better. Returning on Wednesday morning after an exhausting 6 hour day of testing and programming on Tuesday I came to the conclusion that my ear liked the sound I was getting at the medium speed so we eliminated the fast program and started to focus on fine tuning the program I was comfortable with. We left the basic program in and added a program called ASC, which is supposed to automatically reduce the background noise that interferes with understanding speech. I find this program to be very useful in noisy environments and am astonished I can hear Belinda talk to me on a busy downtown Vancouver street. We also add a another program and it is called Whisper, it is supposed to help to pick up soft sounds when you are in a quite environment. So by the end of Wednesday I have all 4 program slots used up, understanding speech better and starting to feel comfortable with my new sound. Because it is just that, a completely new sound, it still is like nothing I have ever heard before. I am not complaining though the sound is very foreign but it is bringing speech to me better than I have heard in years. We are progressing nicely so my doctor suggest we put back in my hearing aid. I put it in and right away I figure something is wrong with it. It sounds terrible, muffled, unclear, I think that maybe the batteries are bad so I replace them, but it doesn't help. Then I come to the realization that this is how I have heard for the past 5 years. I can't believe I have managed. I want to take it out and only use my CI but I am encouraged to have patience and that they should eventually compliment each other and besides this is what I wanted isn't to hear on both sides. As usual my doctor/audiologist is right, I start to get used to both sounds and we do some testing and I am doing well so off we go. We had dinner with some family on Wednesday night. There are 7 to 9 people there at different times and all through the dinner I am doing my own little experiments seeing which programs are better for what and observing how I am doing. At the end of the night I come to the conclusion that my new CI has really just giving me the ability to lip read better. It picks up sounds that are more important for speech, the softer sounds so it makes it easier for me to follow conversations. In situations where I could not see the speaker it was the same old really, pretty difficult to follow. Thursday morning it is determined that this will be my last day of testing and programming. My doctor is pleased with my progress and we seemed to have reached my maximum as far as volume that my ear can take. We eliminate my basic program and add a new one called BEAM, it is supposed to help me in situations where I want to listen to the speaker in front of me. It will shut down sounds behind and beside me and pick up in front only. We also do some telephone testing and I do ok, but it doesn't sound that great. I finish up my physical testing, which we have done all through the week to make sure that everything inside is working and responding and all of those have checked out 100%! My doctor sends me home at lunch on Thursday, a day early and tells me to come back in a month. Each morning I wake up I want to say I am excited to put on my new CI, but I'm not. It's a very hard and foreign sound and takes some getting used to each day so its always toughest first thing in the morning. I have tried and use all programs that have been installed. I find that each has it's own benefit and helps in different situations. I know it is still early and people that have had their CI long term say they are still improving 20 years later so I can't believe that it will only get better because it has already exceeded my expectations.

I'm On!

Wow! This is a whole new experience. I tried to prepare myself for what I would hear, but I came nowhere near. I'm hearing again from my right ear. It is a sound like nothing I have heard before. When I was first turned on it was a constant noise of nothing, continuous noise of nothing just everything. I have put my hearing aid for my left ear away for now and all I hear is coming from my new cochlear implant. We had a 5 hour session today and put 2 programs on my CI. Environmental noise is just that, noise. Cannot tell one thing from the other. Voice is very difficult to hear and describe. Right now it is like someone talking through a microphone in an empty room after they have inhaled helium. But I can hear that messed up voice and am able to have a conversation in a quiet room still relying on lip-reading. I count this as a success and look forward to it improving daily. Tomorrow we start working on fine tuning and hoping we can get something nailed down before I head back. Today went beyond my expectations and we are very happy.

Minor Set back

Had a tough week, started out on Tuesday experiencing some pain from what felt like behind my implant. Was sensitive to touch but the area looked okay? Wednesday came and the pain seemed to be getting worse with even more sensitivity. Spoke with my Doctor in Vancouver and he said the pain is probably part of the healing process nothing to worry about. On Thursday that changed! Skin broke open and started to bleed right on the implant. By this time I am an emotional wreck, waiting for 6 weeks with everything going so well, the incision had completely healed and then all of a sudden we get bleeding and pain. My doctor in Vancouver had a new concern, the implant may be infected and there was a chance I could lose it if I didn't get to Vancouver right away. I live 400 km away so that's a bit of a bugger. We decided to attack it a couple of ways. We took pictures and emailed to the doctors in Vancouver to look at, I went to my local family doctor early on Thursday and then my local ear specialist later in the day. I went from waiting excitingly for Monday for my "Turn On" to maybe having to postpone until this wound heels, to the possibility of losing the implant all together! Like I said it was a rough couple of days. As it turned out I had a stitch abscess. One of the dissolving stitches that were used during my surgery poked through the skin right on the implant. It caused the sensitivity and bleeding but as long as it wasn't infected should not be a big problem. I was put on antibiotics as a precaution and we are back on for my "Turn On" for Monday.

Dog Days

It's the dog days of summer and it is really dragging on. Especially due to the fact that I can't wait for August to end. Well 10 more days until I get my "new sound" and it seems like this has dragged on forever. Feeling really good and just want to go to the next step. I did work up the courage to watch a cochlear implant surgery and it is quite interesting and graphic. If you want to watch, just click here. I have been in contact with the cochlear team in Vancouver and we have got all the details worked out for "turn on" week. My doctor keeps me pretty level headed, making sure I know what to expect and not have very high hopes for immediate success. I know I get the external hardware on the 27th but that will just be the beginning of another long journey that will have a happy ending. So the dog days of summer drag on......

Half Way

Three weeks after surgery and 3 weeks to go until "Turn-On". As we get closer for some reason my expectations have diminished. I have followed and talked to many other people that have received a cochlear implant and they all rave about hearing things like the door squeak, a bird sing, their footsteps and other environmental sounds. I really am not hoping to hear those things, I'm sure it will be nice but what I am really after is to hear voice again. I want to hear my wife say I love you in the dark, my daughter singing from the backseat of the car, my son call me from the other room to tell me the game is on. This is what I am hoping for. Voice will be the most difficult thing to master with my new hearing but I will not stop until I have succeeded.

2 weeks after

Tomorrow is 2 weeks after my surgery. Thought I would post an update as to how I am feeling. Overall feel pretty good. Still have some numbness on the right side of my face, very minor. The top portion of my ear is very numb, not sure if that will get better or here to stay. Had my check-up after the first week and doc said healing well and looked good. Really only missed 4 days of work. When you own your own company it is both good and bad. Somebody has got to be there to make sure that everybody gets paid but on the flip-side very flexible hours so that has helped. Still a long way away to turn on so just biding my time and working on a full recovery so there is no complications. I like to compartmentalize my life so I have stuck that in the back and am trying not to think of it or else it would drive me crazy.

Re-Learning to Hear

As my countdown for turn-on continues it might be a good time to remind myself what to expect. As excited as I am about this event this is really just the beginning in my quest to hear again. The example I gave in an earlier post about what it is like to hear with a cochlear implant is in a perfect world and with excellent results. It will be a totally new way to hear, unlike anything I am used to or compared to normal hearing. I will have to learn HOW to hear again and the journey won't be a short one. I look forward to this challenge and we all hope for the best.

Thoughts on Surgery

First off, thanks for all the warm wishes and words of encouragement, it is appreciated. Now that I can gather my senses a bit better I did have a few thoughts on my surgery. The first now that I think back is it never really hit me that I was having surgery until I was being wheeled into the operating room. I kid you not, even after getting hooked up to the IV an hour before, the thought never crossed my mind. Then here I am being pushed down a hallway, lying on my back looking at the blah white tiles that every hospital has on their ceilings and still not thinking I'm going for surgery. I'm laying there looking up at the ceiling then all of a sudden some numbers come up. Rooms 1, 2 and 4 are lit and I realize that OR #3 is my destination. I was thinking this is very similar to taxiing on a runway at an airport waiting your turn in line so you can take off. That's when it hit me, I'm waiting to take off! You get to this point and it's pretty well to late to back out but the nurse must have seen a change of expression on my face because she asked if everything was alright. I thought, NO its not alright, I'm going into surgery where they plan on implanting a foreign object into my head AFTER they carve a nice little hole in my skull so it will fit, NO I'm not alright! Of course this is just what I thought, my verbal response was a simple, I'm okay, just a little scared that's all. After reassuring to me that everything would be fine, in we went. I can't say enough about the staff at St. Paul's Hospital in Vancouver, everyone I was in contact with was GREAT! The Resident Anesthetist was my liaison to the hearing world, he made sure I understood everyone and if I didn't he relayed it to me. Now in a world of mask its pretty tough to lip read but he made it a lot easier and said he would remove my hearing aid after I was asleep. Next thing I know I am waking up in recovery and like I mentioned in my earlier post, feeling not to bad. My hearing aid is back in and I briefly meet with my surgeon for the 3rd time that day, I would see him 4 times not counting the actual surgery, and he tells me everything went fantastic and they were very happy with the results. He also mentions that I may start to feel it a bit more after the medication starts to wear off, guess that's why they pay him the big bucks because he was right on. I have had 3 other ear surgeries so I knew what to expect in terms of nausea and how my body would react, I hoped for the best but got the same old, sick every time I lifted my head. Lasted for about 24 hours and although still feeling nauseous at least not throwing up anymore. So I'm on my way to recovery. Back at home and probably going into work tomorrow as long as I feel up to driving. Will keep you up to date, see my local doctor on the 24th to make sure all is headed in the right direction and looking forward to the week of August 27th when I will be hooked up.

Made it

Well day after surgery and I am feeling much better. Yesterday started out pretty good, I was amazed at how well I felt immediately following surgery. That didn't last long. I was sent home yesterday afternoon and started to feeling the overwhelming rushes of nausea that is associated with ear surgery. Hope that I have seen the end of that and can focus on getting better. Will post more when feeling up to it.

I'm Going In!

Big day's here, pretty excited and nervous. Made the trek to Vancouver on Sunday for my Monday morning operation. Doc says if all goes well should be back at hotel for dinner. See what happens. We kept pretty busy coming up to this day, it was planned, kept our minds off the anxiety of surgery and focused on other things. Already looking forward to activation day which is tentatively set for August 27th! I will try to post over next couple of days and let you know the progress. Next time I post I will have a mini computer in my head, cool!

Sometimes Frustrated.

This post is just to get something of my chest. It is a problem I come across frequently. The issue is this; why do so many people in the medical profession not know how to communicate with people that are hard of hearing? I am talking about the receptionist in the ENT's office that doesn't look at you when they speak. The doctor that specializes in hearing impairments that covers his mouth while telling you what the problem is. The audiologist that talks to fast to follow. Maybe I expect to much but of all people that should have the knowledge and patience to communicate with, I find it increasing frustrated when doing so. Here are some tips to help better communicate with those that are hard of hearing;
* Make sure you have the listener’s attention before starting to talk.
* Speak slowly and clearly at a normal loudness level. Do not shout.
* When something is not heard or understood, rephrase, do not repeat exactly. Continually repeating the exact words may not help.
* Help the listener by providing visual clues. Look at the listener and keep your hands away from your mouth. Do not talk while chewing or eating.
* Keep the distance between you and the hearing impaired person from 3 to 6 feet for best listening and lipreading.
* Sit or stand so the light is focused on your face, not glaring from behind.
* Eliminate as much extra background noise as possible for better speech understanding.
* Remember that even with a hearing aid the hearing impaired person may not hear or understand everything you say.

Waiting.....

Not much new to update, just waiting. As I wait I continue to research what we will be going through. Sometimes knowledge is a great thing and the internet provides us with that. Ever since I lost my hearing 5 years ago I have been researching and getting updates on the Cochlear Implant. Today I can guide people to a site where they can hear how I will hear. I can watch a full cochlear implant surgery on-line, if I had the stomach for it. I can communicate with other people that have gone through surprisingly similar hearing loss. I say that sometimes knowledge is great because other-times we can overload ourselves and maybe learn to much. I am at the point now where I figure I know enough and just want to do. It's all a matter of patience and each day it gets closer. I have come across many stories good and bad and I think its time to find out how mine will end. So with that we try to go about our normal routine with this lingering in the background and each day my stomach boils a little more wondering how this will all turn out.

Hearing with a Cochlear Implant

This links takes you to a site that gives you an idea of how it is to hear with a cochlear implant. What it is like to hear with a CI.

Support!

Wow, where would I be without it? I have had tremendous support from my wife. She has been incredibly strong through all of this and she is amazing. She never let me get down in the beginning and she is the one that has kept me up all these years. Think about it, one day all is normal and the next day you have a husband with a major disability. I know we all face hardships and are judged by them but with my own personal experience I could not have done the things I have done since losing my hearing without the support that I have received from my wife! My kids, when I first lost my hearing my daughter had the ability to communicate with me through writing, she continues to do this to this day, she is a fabulous writer. She does not know this but the way she expresses herself with her dance is something that I cherish. Both kids learned quickly that actions are gonna speak louder than words and they adapted. My son was very young and he was just learning to read and write at the time so communicating for him was a bit more difficult. He really was coming into his own, communication wise, when I lost my hearing and I remember the fear I had of never getting to really know his voice. He has adapted well, we have our own way to communicate that I don't think his mom even knows about just me and him. He tells me he loves me and that I am the best Dad in the whole world without even saying a word. One example of adjustment that they have all made is they know which environments are more difficult for me to hear in and sometimes they will answer a question for me that I didn't even know I was being asked. They all continue to support my journey back into the hearing world and are all very excited about what lies ahead. My family all have their own expectations for the CI, I hope they come true!

Movie Theaters

We are a movie family, we try to get out opening night or at least opening weekend for the big flicks that we all can enjoy. Movie theaters for the hearing impaired are a challenge. As I have stated earlier I have no hearing on my right side, I do have some residual hearing in my left ear. I have not heard in stereo for years but sure remember sitting in movie theaters with the sound rumbling from one side to the next as if you right in the action. Even though we all know how loud the theaters can be at times, it is almost impossible to pick up any dialog, you just have to watch for actions. Rear Window Captioning (RWC) is offered in the larger theaters in Canada and with this you have a transparent screen that sits in your cup holder in the theater that picks up captions which are posted in reverse above the movie projector window. Its not the best but I love it right now. Only trouble is there is no RWC in Kelowna, so if I want to see what is being said it's off to Vancouver. Secretly this is one of the things I am hoping most for with the CI, to be able to tell which way sound is coming from and yeah maybe enjoy a movie with sound surround and be totally blown away by the advances in sound in the last 13 years. Not really expecting to understand the dialog, just sit back and absorb the sound. Wait and see I guess, wait and see......

We have lift off!

The date has been set! On July 16, 2007 I become part computer! I am going bionic! I am happy, excited and nervous all at the same time. It really can't come quick enough, I have waited so long for this and now the beginning is in site. I will go to Vancouver for 2 days for the surgery and implantation and return 4-6 weeks later to be activated. I can't wait!

What is a Cochlear Implant (C I)?

A cochlear implant is an implanted electronic hearing device, designed to produce useful hearing sensations to a person with severe to profound nerve deafness by electrically stimulating nerves inside the inner ear. This is a link to a site that goes into more detail Cochlear Implants . Here is a link to a site that gives more detail to the style I will be implanted with Nucleus®Freedom™ . Hope this works.

Telephone?

While I wait for my surgery date, I thought I would touch on different subjects and how they have effected my life since losing my hearing. The first is the telephone. I'm a phone person, always have been and always will be, I just use them differently now. Before I lost my hearing I relied on the telephone for everyday life and business. In my chosen profession as a sales rep you are always on the phone closing deals and keeping people happy. Of course when I lost my hearing that all changed. I could no longer hear voices on the other end of the telephone. The phone rings now in our house or business and all I can do is stare at it and hope that someone else gets it. Because I have always relied on the phone I have tried countless gadgets to get it back with not much success. With my hearing aid and some other assistive listening devices (ALDs) I have been able to pick up some voice. To give you an idea of how it sounds, you can't tell if you are talking to a man, women or child. Emotion is left out so if someone is sad, happy or frustrated, you can't pick this up. Those are the good days. Since I am a gadget guy I wrapped myself in technology that would help me to communicate and keep me in the loop. I love my Blackberry's! I can stay in contact with my family with text messages and also stay in the business loop with instant emails. I miss the phone and the ability to talk to my parents who live in a different city. There are different success stories from people that have received the CI and the ability to use the phone again. I hope I am one of the CI telephone success stories.

First Time Blogger

Decided to take the plunge, more of a journal for myself and maybe far away family members can follow my journey back to hearing. I have had some kind of hearing issues for as long back as I can remember but I guess I got serious about it in 1988 when I had my first operation to restore my hearing in my left ear due to otosclorosis. I had stapes surgery at that time and it was very successful! Complete restore and improved hearing. The problem of course was also in my right ear and over the next 2 years it deteriorated to the point that I had to have another stapes surgery in my right ear. I had no problem making this decision after having huge success in my left ear. Well the right ear operation did not go well, we were never able to restore the hearing and I lost the ability to hear in stereo. Since 1990 I have basically gotten by with just my left ear and considered myself of normal hearing. That all changed in July 2002. One Saturday morning I was talking to my neighbor and noticed I was having a tough time to hear him, I thought nothing of it but as the day went on it got worse. Sunday I went to a walk in clinic and the Dr. there said it looked like I had some fluid build up behind the eardrum and it was probably nothing. My hearing continued to get worse and on Monday I went to my Dr. in the morning and he got me in to see an ENT (Ear, Nose & Throat Specialist) that afternoon. He did a very though and highly invasive examination and he could find nothing wrong with me, I was perfectly healthy! He gave me some meds to stop the retreat or jolt my hearing back and by Tuesday the decline had stopped. When the damage was done I had lost what little hearing I had left in my right ear and had gone to a profound hearing loss in my left ear. It was chalked up to autoimmune disease basically because we could find no other reason for this to happen. My hearing high point was now 80 dB @ 250 Fhz and a low of 120 dB @ 1000 FHz (off the chart). It was a shock and changes had to be made in my lifestyle and the way I communicated. I learned how to read lips, I guess I had been teaching myself the last 12 years because I got pretty good pretty quick. I was tested yearly for the Cochlear Implant with always passing the test. My hearing continued to decline at about 20% a year and in November of 2006 I finally passed the CI test and became a candidate. I am waiting now for a surgery date with hopes of it being this summer and that is why I started this blog. So whoever is reading can come along on this journey if they want. So hear we go......