Skype conversation with a friend...

I recently had a conversation on Skype with a friend who was asking some questions about what I was experiencing. I thought that maybe these questions might be passing through the minds of others. I told my friend I wanted to save this conversation and post it (with some major editing of course!).

I had been experiencing some very bad headaches since my 2nd mapping on the 29th of December. After reading the blog of another CI recipient who lives in Australia, I am learning that experiencing headaches are a normal side effect from the mappings. I am happy to say that headaches have ceased to just a mild ache in the area of where I have the implant at the end of a long day-but it's tolerable compared to the migraines I was having daily. I'm nervous that the 3rd mapping experience will start the headaches again, but since I am hearing at such a higher volume than when the Jenny (my audiologist) first turned on the implant, I think my brain is finally starting to make a lot more sense of the sounds.

Below is an excerpt from the chat I had with my friend. I left out anything that was not really relevant to his questions about the implant. I hope you find it to be as amusing as I do...and a bit informative as well!!

Chat between Friend & Lindz........

Friend: how are the headaches?

lindz: getting better...

Friend: good

lindz: I get shots of tramadol to help.

Friend: any idea how long they are going to last?

lindz: well I have a feeling I will get headaches with each mapping...until my brain adjusts to the stimulation

Friend: that’s what it sounds like.

lindz: my headaches have gone away for now so I am happy about that...the swelling has gone down...I can totally feel my implant, it kind of weird’s me out

Friend: what when you touch it or always?

lindz: both... at the end of the day I can feel it kind of aching in my head and the magnet makes my skull sore.

Friend: well the touch thing will always be there, but you will get use to it

lindz: and yeah I will get used to it..It just feels really weird....

Friend: I bet. But you’re now a bionic woman

Friend: you voice is getting better.

lindz: you are the 3rd person to say that!

Friend: when did that start?

lindz: oh...i guess when I got the implant turned on.

lindz: I guess I am hearing my voice better?

Friend: like your speech is way better.

Friend: you have lost your deaf lisp

lindz: like I said...you’re the 3rd or 4th person to say that

lindz: I want to go back to speech therapy. It’s a bit tiring...because I feel like I am enunciating things differently

lindz: I guess....I feel a bit embarrassed about blogging....

Friend: why?

lindz: I don't want to seem vain..... But I do know people are interested.

lindz: I really have to save this convo!!! 

Friend: that’s because its technology being used in the way it was intended to.

lindz: pretty trippy huh?? I now understand a lot more of other people's perspectives about the implant.

Friend: if you had to do it again would you?

lindz: the implant????

lindz: well...

Friend: yes

lindz: I'm really glad I waited....

lindz: but I think I'm an exceptional case.

Friend: I don’t know.... what do the doctors think?

lindz: if they had the technology as well as they do now back when I was diagnosed...then that is a different story

lindz: they agree I would not have been a candidate back then

Friend: so I have a question

Friend: it’s a computer chip, do they have software updates.

lindz: YES!

lindz: that’s why I have to keep going back

Friend: I hope Microsoft is not doing them

Friend: LOL

Friend: what is it like after a new mapping?

lindz: very disorienting for the first hour or so

Friend: what are they doing?

lindz: my mom and dad was with me the first time, my stepdad the 2nd time

Friend: so, when you get to the clinic, do you unplug it?

Lindz: so yes when I go in...They set me up to a computer and reprogram it and increase the volume on 4 programs

**********************************************************************************

This is as far as our conversation got as my friend had to log off....but this is a great starting point to keep up my motivation to blog and answer questions that people have. So please! ask away...or have a chat with me about it online-just be warned that I might copy and paste what we discussed in a blog (and of course your identity will be protected).

More later!!...

Some back-story info leading up to the CI surgery

I was looking through my old emails and came across a mass email I wrote to friends and family about the decision to get the implant. I felt I need to add a bit of a back-story my experience, so I wanted to include this in my blogspot. I need to note here though that my surgery was actually postponed due to an unexpected illness-so surgery was pushed to December 17th.

November 8, 2009:
 
So here is the update from my visit to California Ear Institute on November 4th and 5th. I had an MRI on Wednesday the 4th, which showed no abnormalities of the inner ear, which makes surgery for them easier to fit the cochlear implant into my cochlea. Thursday morning, I had a hearing test with both my aids on to evaluate how much I can hear with them on and to see if the cochlear will make any significant improvement.

After my hearing evaluation, I got the green light to have an implant in my right ear. I am going to Palo Alto on the 9th with mom for a pre-op appointment and then on the 10th I have surgery as an outpatient. It should take up to 3 hours for the surgery. I think mom and I will probably stay the night again in Palo Alto/Stanford area and then head home the next day. I think I am having surgery at a place called Waverly Medical Center close to Stanford Medical Center. 

The healing period from surgery is 1 week. I go back down on the 16th of December to get the implant "turned on". The whole recovery period from the surgery should last about 3 weeks or so.  I am sure I will have more follow up appointments in January and the months after that to adjust and program the implant according to my hearing level. 

If you want to find out more information about the implant itself-then go to www.cochlear.com.  That is the company that supplies the device.  I'm only getting one implant for now and the doctors and I will see how I do with one.  I might not ever need a second implant....depends on a lot of factors like how well I can hear with just one. Having two implants put in at once will be way too much stimulation for me to handle and a longer rehabilitation period since my brain will have to work overtime to process what I am hearing.

The website for the doctor who is performing my surgery is: http://calear.com/. Dr. Roberson will be doing the surgery: http://calear.com/md-joseph-roberson-california-ear-institute-bay-area.php. He and his staff have been wonderful so far. I don't feel as if they have been pressuring me to get the implant-they have really just been giving me the information I need to decide if I want to do this. I did find out from my last audiogram that my hearing has been declining....I have a feeling it will go down even more over the next year or so which is why I think this is the best time for me to get this done.  I did a genetic blood test two weeks ago so we could investigate even further the cause of my deafness. I think we will have the test results back by December 9th. Dr. Roberson said that if there was no indication for my deafness from the blood test, he will make sure he finds out the cause of my loss during my lifetime. :-).  So we will see! Would be nice to know what caused it! 

I will still be wearing a hearing aid in my left ear. I might find that I hear well enough without having to wear my left hearing aid. I will be doing some rehabilitation with hearing specialists and hopefully start having some speech therapy as well. I'm hoping to find those services in the Reno area or maybe Roseville or Sacramento.

As we get closer to the date of surgery, I may have more things to update everyone on. Any questions you have, please feel free to ask!!! I'm excited and nervous and a whole mix of emotions are coming up for me. I can't really comprehend how much this procedure may make a difference in my life, but I know it will-and I am ready to make a leap and I welcome the new change!

Recognizing music and sounds more clearly!!

I know I am jumping ahead of my chronological order of events with my blogs, but I couldn't help to interject here with a present experience that I am having.

I'm sitting at the coffee shop, Wild Cherries in Truckee, enjoying a latte', working on some emails and prepping for the classes I teach.  I must  mention that last night when I was in bed, I started playing around with my remote control to see how much I could manipulate the sounds I could hear. Since I happened to be in a quiet room while I was fiddling around with the remote, I could not notice much variety in the sounds I was listening to.  Now that I am sitting in the coffee shop, there is so much noise, so I am sitting here and LISTENING to the cacophony of sounds coming at me from every direction.  I tune in to the music that is playing over the speakers and I'm grinning from ear to ear because I KNOW what CD is being played-one of my all time favorites-Thievery Corporation.  I have this CD at home (somewhere).

What's so cool about this moment is that usually when I am with friends in a coffee shop, or out and about somewhere, I can see them doing a little dancing-to-the-beat motion whenever there is music playing. Who ever I am hanging out with always ends up asking  me if I can hear what song is playing. In the past, all I could detect was a VERY low jumble of bass and instruments, and if I was lucky enough by straining my concentration on the music hard enough, I could make out a song I was familiar with now and then.

I'm PSYCHED that I can hear the music at volume I never was able to hear before. When I put on the processor this morning, I had it set to program 2. volume 5.  But now that I am in a super noisy environment, I wanted to push myself and see if I could tolerate higher volume. And now, all the people who are talking around me in the shop sound so cartoonish to me. My right ear feels like it is flaring at each sound wave that hits my transmitted and travels into my cochlea. I'm experiencing some discomfort and my headache is coming back on, but it's so worth it to be able to HEAR the music in a way I never have before.

If you know me well enough, then you would know that one of my unique talents is my ability to read lips.  But today, I am forcing myself not to zone in on people's mouth's from across the room (and eavesdrop on their conversations) and instead I am trying to make out individual words that people are saying. Not quiet there yet-but I do hear snatches of specific words from a few tables over, as well as the dishes clattering in the kitchen area, people's coffee mugs hitting the surface of the table, and the rustling of the pages turning while a newspaper is being read. It's not so horrible sounding anymore, just uncomfortable and listening to the sounds is bringing back my headache. Ugh...

Since my 2nd mapping (which I will go back and write about at another time), I have been experiencing headaches everyday.  Migraine medications like Imitrix don't work for me, unfortunately.  It's come down to having to go to my primary doctor and getting a shot of tramadol to help reduce the inflammation.That seems to do the trick (and lots of ice on my head when I am in bed at night).

I have been reading other blogs from other people who have had the implant surgery and it seems that this is a common side effect since my brain is being overstimulated from all the new sounds I am hearing.  If any of you readers have any good suggestions on how to best alleviate migraines, then I would love to hear it.

Until next time.....More writing to come....I just got a bit inspired by the music today! :-)

Turning on and tuning in...

At 3 pm on December 22nd, my mom and dad walk into the office of Jenny Heriot, my cochlear implant audiologist.  I brought a long a video camera to capture the moment when I would hear my first sound since I started to lose my hearing at age 2.

Jenny had on her desk, a huge box, in which it contained a back up processor, extra ear hooks, a colorful case cover for my processor (sort of like a protective plastic cover for iPhones and cell phones), hundreds of batteries, DVD's to help me with online sound exercises and an assortment of other parts and gadgets.  She went over the basic stuff that she felt I needed to know for now in order to operate the processor, and how to use the remote control functions.  Mom is still snapping photos for the book that I am to write one of these days, and my dad is sitting there with the most curious expression on his face (he is a little behind on all the new technology that is out there).

It was time to put the processor behind my ear and snap the magnetic transmitter to my head. It took me a few attempts to find the magnet under the surface of my scalp since my head was still a bit swollen from surgery. The processor had a wire that was connected to Jenny's computer, which had the programming software in it.  She explained to me that to start, the first sounds that comes from the software would be beeps ranging from 1-4 beeps. Each time I hear a beep, I am to tell her how many beeps I hear, as there will be a range of patterns that are inconsistent.  The beeps will start really soft, and get louder as I start to hear them. Jenny told me to be patient since many people have a hard time hearing the beeps at first since the tones and volume is so low.

When I was ready to listen to my first string of beeps, she told me to take out my left hearing aid so I couldn't hear anything but the sound that was going into my right ear. I'm sitting in my chair, as Jenny starts hitting certain buttons on her keyboard. I hear nothing. My parents are looking at me in anticipation. Let me note here that my parents are also able to hear the beeps that I am supposed to hear. So if the sound of the beep is too low for me to recognize, they can hear it since their ears are sharper than mine (obviously). I still don't hear anything, as the seconds go by.

All of  a sudden, I felt a huge jolt inside my right ear-almost as if I was electrocuted. The sensation of whatever it was that I felt made me literally jump out of my chair.  I must have yelped or reacted loudly, since Jenny turned off the beeps and signed to me in sign language, "Are you ok????". My mom and dad looked at me in disbelief and amazement.  I sat there, my eyes wide and shocked and confused and told them I was ok. Then I started to cry, as I realized that what I felt was actually a sound.  And it sounded HORRIBLE. But it was still a sound that my EAR heard.  Jenny started to ask me why I jumped and if I was in any pain, to which I responded that I was just completely surprised and shocked and that I FELT the sound more than I HEARD it. She explained to me that the electrodes in my cochlea were firing signals to my brain for the first time in a long time, and to feel the sound is a normal reaction from many people during their first processor activation.  Even though what she said made sense to me, I was blown away by the foreign sensation that I felt inside my ear and thought that if what I felt was sound, then what the hell did I do?? I then started to MISS the hearing that I had from my hearing aid. The sounds I knew for so many years were comfortable to me and familiar and I realized that I had a LOT of work ahead of me if I had to overcome the strange sensations of hearing with an implant.

It was the point of no return anyway....and I became excited to hear the next series of beeps from the software.  As Jenny started pushing buttons again, I felt/heard various beeps in an assortment of sound ranges.  It was difficult for me to count how many beeps she generated from the software.  All I could do was tell her that I felt sound in my ear and the intensity of which I felt the beeps. Sometimes the vibrations I felt came to the point of very uncomfortable and my ear and head would ache. We continued to program (map) the processor for four different programs. Each program would start a certain volume and increase up to 10. If I pushed program 2 on my remote control, the sounds increased even more, and so on.

After the four programs were set at a volume that was comfortable for my ear, she then had me put my left hearing aid back in to see how I could hear with the two devices working together. It was a relief to put in my other hearing aid, as it brought my sense of balance back to almost normal. But as I listened to Jenny, my mom and my dad talk, what I was hearing sounded SO bizzare to me. They DID sound like Mickey Mouse (as all my deaf friends who got implants told me it might sound like). Imagine listening to someone talk into a tin, aluminum can, and their voices echoing off the can. And their voices sounded echoey, as each letter and syllable entered my ear and started firing off sounds in a new way that my brain has not processed. Even as I started to SLOWLY adjust to the new sounds I was hearing, I almost couldn't stand it, and all I wanted to do was rip the processor off my head and go back to that muffled, amplified sound I knew so well. Even no sound at all was better than what I was hearing.

Jenny continued to reassure me that all that I was experiencing was perfectly normal and that I needed time to get used to it. She showed me the homework assignments that I needed to do while at home with family members or close friends. There was a list of words that all sounded similar or had similar syllable structure and sound. While practicing with someone, I am to repeat back the words that are read from the list while my left hearing aid is out. I needed to start depending on my right ear for my hearing needs and to start training my ear to distinguish one sound from another.  I only had the processor on for about 40 minutes at this point, and already I was overstimulated and mentally exhausted and emotionally drained.  I really thought that the processor would be turned on and I would "hear" like I did with my aid on, but that it would just be louder and clearer.  I had NO idea that I would be hearing the way that I was, and that the volume of the processor was still so low that I could only handle hearing sounds at a whisper. Anything louder than that made my ear ache and throb from the vibrations that were occurring inside my cochlea.I was frustrated that the volume at which I was hearing was set so low. I was so sure that I was going to walk out of her office with a better sense of hearing.  I was extremely disappointed in the quality of sound, yet I also realized that the implant had so much potential to reach a level of sound that would be equal to a person with "normal" hearing.

Before I knew it, the appointment was coming to a close and Jenny was rescheduling me to come back for my 2nd mapping on December 29th, 7 days away.  The goal for our next appointment? I was to be listening at program four, volume 10!!  I had 7 days to work through the programs and volume so that I would be ready to have my processor turned up even louder! My days ahead would be filled with exploring my new world of sound......


(to be continued...)
More CI info

How does it sound now? | Kate's Cochlear Implant

http://katelocke.wordpress.com/2009/08/14/how-does-it-sound-now/
Sent on the Now Network� from my Sprint® BlackBerry

Part 2 coming soon to your broswer!

I wanted to wish those reading this a happy 2010!!! I just made it back home to Truckee in time for New Years Eve and I am so glad to be home and back in my bed after being in Marin since the 22nd.

I will continue writing about the CI experience and post something here shortly....In the meantime, I hope everyone had a great start of the decade today!

Where do I start?? A little pre-op/post-op blogging...

Instead of starting my blog about how the process began with getting the cochlear implant (CI), I thought it was best to just dive right in and start blogging about what I have been experiencing.  Hopefully, my story will soon start to backtrack so that I can explain how I ended up where I am today, as I know there are very curious minds out there.

On December 15th, my mom and I drove to Stanford for my pre-op appointment at California Ear Institute. My surgery was scheduled for December 17th and I was to have the implant placed in my right ear, as this one had less hearing than my left ear.

On the morning of December 16th, I woke up in my bed at the hotel with a neck so stiff on my right side, that I was unable to move my head/neck without crying in pain. Mom and I had planned to get some errandand shopping done that day but due to my unexpected neck issue, I spent most of my morning searching online for a chiropractor in the area who would see me to help alleviate the pain.  Luckily, I got an appointment and had my neck adjusted.  I was then told to come back in on the morning of my cochlear implant surgery to get my neck adjusted again so I would not be hurting quite so much from two issues going on in my neck area. What a way to start off the operation!

On the morning of the 17th, mom and I left the chiropractor and headed for Waverly Surgery Center in Palo Alto to check in around 11:30 am.  When we got to the center, mom started snapping tons of photos while I proceeded to fill out the paper work and get ready to go into the waiting room to change for surgery. I guess there were other patients having surgery before me, so my mom and I ended up waiting for a couple hours. At one point, one of the nurses came to my area where I was on the gurney and told me that the anesthesiologist was on the phone and wished to speak with me. I remember looking at her like she was nuts, and my mom turned to the nurse and said, "she's deaf and can't really talk on the phone, so I will talk to him on her behalf."  I was thinking to myself, "I'm getting a COCHLEAR IMPLANT and she thinks I can use the phone????" Some people just don't get it.....(sigh).

Finally around 2 pm, my anesthesiologist showed up and started an IV of some amazing drugs that I really put me in a  good mood. I gave mom a kiss and a couple tears were shed as I was wheeled into the surgery room. I was feeling whole range of different emotions, excited, nervous, but also very sad, as if I was saying goodbye to a part of myself. I knew in my heart I would always be the same Lindsay.  Yet, I was so used to the person I had become.  After so many years of denial over my deafness, to my acceptance of my "disability", my resistance to the idea of an implant  that could possibly destroy my sense of self, and finally, a change of heart and acceptance of allowing myself to live for ME and not a cultural identity. The emotional attachments and psychological issues connected to my identity had a big impact on my decisions about how I decided to get the implant. I will elaborate a bit more on this topic in another blog..... 

Surgery took about 2 hours and I spent about an hour in the recovery room until I felt stable enough to head back to the hotel. I had a purple bandage wrapped around my head and my right ear area felt painfully swollen and throbbing. Thankfully, I had a good supply of pain relief medications to get me through the next few days. The night of surgery I was pretty much knocked out on medications and was able to rest.

Mom and I left for Truckee on the 18th, and I spent the next few days resting at home and adjusting new sensations I felt in my head of this IMPLANT in my ear.

Usually, patients who have the implant heal about 2 weeks until they get the processor turned on and "map" and program it for sound. With Christmas right around the corner, the doctors thought I was ready to be "turned on" 5 days after surgery.  After traveling back and forth between Truckee and Stanford so many times within the past month or so, mom and I decided it was best to caravan down to the Bay Area; her boyfriend Jeff driving his truck, while we took my Caddy.  It had just dumped fresh snow in Truckee the day and night before we left, and so when we got onto I80 West, we encountered the chain control/CALTRANS chaos that occurs right at the Donner Pass Road exit.  And they were not going to let us pass over the summit without any chains on.  So my mom managed to convince the chain control guy that we were getting off the freeway at the exit so that her boyfriend could put the chains on the tires.

We find Jeff several cars ahead of us on Donner Pass Road by Donner Lake, and he calls us on the cell phone and tells us to pull over at the market. When we met him in the parking lot, he tells my mom to get in his truck and put it in 4 wheel drive. He then gets into the drivers seat of my car, let's my mom pull ahead of him onto the road, and we follow her, sans chains, up and over Old Highway 40.  When we finally got to Emigrant Gap, we all pull off the freeway and the drivers switch cars. Getting back on the road, we make our way down the freeway towards the Bay Area.

I was not entirely sure that I was going to get my processor turned on that day. It depended on how well my ear was healing from the surgery. If it turned out that I was not ready to have the processor turned on, then I would need to reschedule within the next day or so. My mom had to be back in Truckee the next day for work, while I could stay with family in Marin and come back to Stanford if needed. Thus the need for two cars.

We arrived to CEI just in time for my 1:30 appointment. My dad was there to meet us, having driven from Marin, where he lives. This day was as important to my parents as it was to me. They have spent years taking me to my audiologists and doctors during my childhood, and this was not an appointment I wanted either of them to miss. As happy as I was that we made it on time and that both my mom and dad were there with me on this day, I was hit with a flood of emotions, and then a feeling of extreme panic. Right before we were called into the doctors office, tears started to pour down my face and it all started to really sink in. THIS WAS IT. The moment was finally here-and I was so overwhelmed with the thought that EVERYTHING was about to change. And the drive from Truckee did not help calm my nerves prior to walking into the appointment that was going to be the start of a new life for me. I felt so embarrassed in front of the staff, while the tears just started to come down and I started to hyperventilate a bit. I am a bit prone to panic attacks (which is something that I am now beginning to see had a lot to do with coping with my deafness over the years). In the privacy of the doctor's office, I had a slight meltdown. I'm so grateful that my parents just stayed present with me and hugged me and held my hand until I was able to calm down enough to actually talk coherently. It was so interesting, the influx of emotions, as they were so mixed together. My mom asked me if I was scared. I know I had no reason to be, but I felt slightly afraid, but also exhilarated. I am not sure if I can really convey my feelings appropriately here in this blog. But by the time the doctor came in to let me know that the surgery was successful and to take a look inside my ear and tell me everything was healing well, I was cracking jokes and smiling as if I had not just had a panic attack. Since I was healing just fine, I knew my "turn on" was going to happen next., and that this was the moment I had been waiting for since I had made the decision to get the implant.