Monday, February 28, 2005

I was trained and mapped today, it made for a great day!

I feel so positive today. I went to auditory training this morning. Susie the audiologist who is working with me, and is one of best, noted that I was having trouble discriminating t,p,h,m and n, in isolated words. She shows me pictures and then says a word and I have to show her what she has said, making fun of some of the pictures as we work. Susie has also ordered the "Sound and Beyond" software, which I am looking forward to working with. I then had an appointment for my third mapping.

Aimee my new greatest audi was so informative and great today. She used a audiogram that shows where different sounds are as far as loudness and frequencies. She then put in my old measurements, before the implant, and then my new measurements, which I have posted below. CI stands for where I was testing today at the volume I was wearing it when I was missing words in therapy. CI-2 is where I tested it when I turned the processor up to the volume level the computer suggested. Well, as you can see it brings me to near-normal hearing. Perception is another matter, but I am getting there too.

Aimee also made a few changes that I am really liking so far. She changed "sensitivity" to "volume" control and added "sound processing" this will cut down the obtrusively loud sounds. So far so good,ok really, I am loving it. I came home with it on mid volume, P1 and I have already worked up to P2 mid volume. I have had water running and it is not overwhelming like before. I can hear my fountain and it sounds about the level I would think it should. I still don't like the sound of a chip bag, but hey maybe it's time to give up chips. I feel like I am back on my cloud again. By the way, we saw a gorgeous rainbow this evening, it's been a very good day.

This is My Current Audiogram after my CI Posted by Hello

Sunday, February 27, 2005

Two weeks of sound

What a busy week I have had, full of sound. Things have calmed down since my last mapping, I still can't handle as much volume as they say I should but I think I am doing great. We had a few beautiful days last week and I loved being outside with my CI. I could hear so many things. Iko and I went for a walk and I could hear the leaves under his feet. The birds sang and sang for me. I stopped by the creek and listened to the water, many times I was almost brought to tears. Cars are still sneaking up on me, but once they are close to me they seem really loud.
I went to a doctors office and the reception desk was out of sight from the waiting room. They called my name to update records and I heard them! It was so great! They called out a few other names and I did not understand them but I got mine and that's all that mattered.
On Friday, I went to auditory training and it went well. I have a female doing the therapy which is my biggest challenge but greatest blessing. I will be going twice a week for training and tomorrow I go for my third mapping. I also used the phone last week and did pretty well. I am working with books on tape but I still have to follow along with the book to know what is being said.
Now a beauty note, I got my hair cut yesterday. Not much, but I wanted to find a better way to wear it, to hide the processor. I don't mind people seeing it, but I do mind them staring. Mark said they are just trying to figure out how my new phone works and how they can get one, lol.
I am going to be posting when ever I have a ci moment to share, but I am finding more and more that I am to busy listening to be on the computer. Oh I almost forgot we were working on the baseboards and Mark went in the garage, I was up stairs and I heard him using the saw. I could tell when he was cutting and when he stopped. I also heard his beeper, he has been on call for 18 years and I have never heard his beeper before.

Monday, February 21, 2005

Second mapping

Tomorrow will be a week and this is really hard. I feel so overwhelmed with all the noise I am hearing. They said that I would not have the pain that I had with hearing aids and I don't but there is still something that is at the brink of pain. Scary thought, what if it me??? What if I just hate sound--what if I just want selective sounds? Hey, you know how I wanted to hear the birds. Well I hear them, all the time!!! Even when they are not around. My tinnitus is going crazy, but at least it sounds like pretty birds.
We change program 1 and left program 2 alone. I seemed to do ok with the new one until I changed back to the old one and having it to compare to lets me know that it was not so bad. I go back next Monday so will work with both to see the pros and cons of each.

Friday, February 18, 2005

Baby steps

Yesterday was day 3 of sound and I slipped a little from cloud 9, but not far. Had lunch with a good friend in a very noisy restaurant and I experienced pain and throbbing in my inner ear. By the time evening came my neck and jaw were so tense. I believe we have the comfort (c-level)set to high. I go Monday for another mapping. I guess I can always take a weekend break from sound but.... Naaaah... It's not that bad! I still love it, I will just stay out of loud places for now.
Today Seth, out of the blue came and told me how happy he is to be alive. I was washed by his voice and words as well as his sentiment and I thought "Me too, son. Me too." I can't wait to listen and walk, listen and run, listen and fly, listen and live -- again! Some times I am embarrassed by the fact that I let myself pull back so far from the person I once was. I am seeing more clearly how strong a person I really am, and forced retreat is not something I plan on allowing.

Wednesday, February 16, 2005

This is My Special Cochlear Koala Bear. A special Thanks to Deanie @childrens for securing this bear for me,,it is small but means so much,besides, Seth needed another brother. Posted by Hello

and this one is the Unit resting in my Mastoid Bone. The 2nd wire is for grounding. Posted by Hello

This is my electrode inserting into the round window, the opening of the Cochlea. Posted by Hello

The Mapping Crew Posted by Hello

Heres a MOVIE of How It's done,,a little graphic rated gorey

You can click on this link for the surgical (explicit) way a Cochlear Impant is performed. It starts with still pictures and then shows the drilling on the bone !!!!!!

Waiting for my Sound Posted by Hello

Trying to find the magnet Posted by Hello

Activation DAY !!!!!!!!!!!!!!!!!!!!

Oh wow.... We have blast off! I will try to describe what is indescribable.
The first hour of hook-up was full of sound but only in my head, they where setting levels and stuff through a body -worn processor. I heard a bunch of sounds or beep series that were loud but not painful. Everything was working great they said and it was time to turn it on. Boy what a surprise, but not a shock! I am pleased to say my ci friends had prepared me well. Everyone has told me how bad it would be at first and guess what, they were right!!!! I sounded so weird and I could not understand anything. Everyone was talking and asking me questions. It was all just to much to take in. After a few minutes things started to settle down and it went from really bad to 'ok this is interesting'.

I listened and asked 'what is that sound' often. We moved up three levels in volume in about 45 minutes. I was then shown all my wires and stuff; good thing we drove the van for all the accessories. Then they put the programs in my little 3G behind the ear processor. I was very confused by all the sound and did not do very well with setting up next mapping or saying our good -byes. On the way to lunch with family and friends I was feeling overwhelmed but not to disappointed. The restaurant was very noisy and I had to speech read everyone, I was understanding nothing aurally.
First ci moment came as we were leaving, in the parking lot my son asked if I could hear the birds. The interstate was very close and I first said ,"no; all I hear is the roar of traffic", but then I stopped and listened very close......BIRDS!!!!!
I could hear the birds and over the traffic. I thought everyone was going to cry.
On the way home Seth my 10 year old told me 'Mom I am so proud of you', Matthew (16) dittoed it. Now I was really fighting tears.

On our deck at home we listened to more birds visiting the new bird feed a faith gift my sister gave me the day after my surgery. (Denise - I hear the birds,
Thank you) In the house I hear this strange little sound that turns out to be our dogs toenails on the wood floor. I am thinking - doggie slippers were just invented.(smile) It's been a big day and it only 2pm, nap time.

Mark and I met friends for dinner (Jerry and Evelyn, he is a fellow ci-er). Same thing the place was noisy but I did ok comparing hookup and surgery stories. Evelyn rode with us over to the hospital where we have our SHHH meeting. While in the car I noticed how much I was hearing her voice. She is very soft and has always been hard for me to understand. I said " I think I hear you so well I could understand you with my eyes closed". Mark was quick to challenge me to try. I COULD HEAR HER EVERY WORD!!!! I am just amazed how much better I am doing in just a few hours.
I am so tired from all the sound and excitement, I must call it a day. Thanks for letting me share.


Monday, February 14, 2005

Cochlear Implant Journey

Hello to all. My name is Susan and this is my Journey to Sound. I started losing my hearing in my mid-twenties, now have a profound bilateral sensorineural loss. On Jan. 18,2005 I was implanted with the Nucleus 3 cochlear implant. I had my surgery done at Children's Hospital by Dr. John Little.

Two and ahalf years ago I went through all of the evaluation processes to get an implant and at that time I was told to wait until my hearing and understanding dropped just a little more.
Over the next two years, I met more people with ci (cochlear implants) who where doing so well that I decided to try again. Yeah?? I had lost more hearing and now could get the implant. I had a months wait, in which time I did a lot of thinking, stewing, and drove my family crazy.
Some of my fears were the obvious; death, bleeding, pain, facial paralysis, and so on. Then there were other fears that seemed abstract and weird. I wondered if others would feel the same about me, or if I would feel the same about myself. Was I sidestepping God? Were there things I needed to learn that I had not? As a few close friends had told me, I was thinking way to much.

Jan. 18th. Tuesday we arrived at the hospital at 8:30 am, Mark drinking his Starbucks while I longed for my Chai Tea Latte (NPO). I knitted and bounced of the walls till about twelve when they finally came for me. I felt such fear, words can not express! Then the tears just fell while I tried to apologize to my family, I was just so scared. The next thing I know it's over!! No dizzyness, no balance problems, things were not to bad. They brought me something for pain which I soon learned I was allergic to. I got sick to my stomach a few times in the hospital and once on the trip home. We changed my meds and I was soon resting nicely.

The next day I saw Dr. Little to remove my big turbin bandage. Wow it felt good to get that thing off, it is put on very tightly. I was told I could wash my hair on Friday of that week. Monday, one week after surgery the steri-stips were taken off and the incision looked very good. I would not say I had much pain: it was more discomfort. It was very hard sleeping. My implant is on the right side which is my sleeping side. My neck and jaw ached for about three weeks. Even now when I open my mouth wide; it sometimes hurts. The incision site has a dull ache with numbness.

My residual hearing in the implanted ear is now completely gone. This has not affected me as much as I had feared, but has made sound direction even harder for me. I have to be looking at you, to hear what you are saying. All that will hopefully change tomorrow when we finally turn the implant on. I am starting with the 'behind the ear' - 3G processor. People are telling me not to expect much at first, things will sound really weird.

That's all for now, I will keep everyone posted.


Welcome to my journey. Posted by Hello

Starting to get really scared!..Which ways the door? Posted by Hello

It's done and my best friend Beth was there to help Posted by Hello

Oooowwwwww!!!!! A beautiful stitchin job by Dr. John Little, Pediatrics ENT Surgeon@East TN Childrens Hospital Posted by Hello

Just 4 short weeks after surgery and 1 day before hook-up!!! Posted by Hello