One Month from Today!

Hello family and friends,

Today marks a month until my second cochlear implant surgery. I have been trying to prepare for this as best as I can. Any surgery can be scary. I've been through this before, but it has been five years. The only thing that comes to mind that I am not looking forward to is the possible nausea. I have an appointment at Mayo Clinic on Friday to meet with the surgeon and audiologist. I plan to find out what can be done to reduce the nausea. I think the anesthesia may have caused some of the nausea because I was very nauseous after my upper jaw surgery as well. On the other hand, I have a few friends who were able to walk out of the recovery room like it was no big deal. I am hoping for that!

To prepare myself, I have been reading, Listening Closely: A Journey to Bilateral Hearing by Arelene Romoff. I recommend this book for anyone trying to decide if they should pursue a second implant. It has been interesting to read about her experiences and how much easier life is for her in noisy situations with two ears. Also, music sounds more fuller. She now hears in stereo and has said she hears certain instruments from one side and different ones on the other side. One thing I am really looking forward to if this works, is being able to sit any where and not always making sure everyone is on my right side. It's getting to the point that I am turning my whole body to get my ear facing the speaker's mouth when in listening in a lot background noise.

Another thing I did to prepare myself was attending a Cochlear Implant Social Group. I attended for the first time yesterday. I was a little nervous because I did not know anyone. When I first walked into the room, most of the people were probably 55 - 85 years old, so that was a little interesting for me. I decided to stay and see how it went. I am glad I did because shortly after I sat down, two younger women who are deaf joined the group. Most of the group lost their hearing from old age and shared stories about how much it has changed their life. Some seemed like it still was a struggle to hear, but I think it can be difficult to train your brain after hearing for most of your life. It's not like putting on a hearing aid and things will automatically be louder.

We each took turns introducing ourselves. The two women who were deaf shared with the group the cultural perspective of why the Deaf Community does not support the cochlear implant. It was an interesting discussion. They seemed to have similar concerns that I had when I first was implanted of losing my signing culture or not feeling like they would belong to the community anymore. I have been very fortunate to have accepting and understanding friends in the community who respect that I have a cochlear implant. I still divide my time between my friends who sign and friends who do not. I feel blessed to be able to interact with both groups. 

Lastly, my dear friend Alicia shared this You Tube video (with subtitles) with me recently and I thought it gave a good description of how a cochlear implant works, sounds like and a woman's honest perspective of having a cochlear implant. I can relate to a lot of what she has to say, but I cannot dance to save my life!

One more thing, I probably should explain the picture. I recently had an x-ray done at the ENT. I thought it was pretty neat to see the cochlear implant in my head along with my crown, ha.

Thanks for reading!

Another Big Decision

I bet you can guess what my big decision is going to be...

Over the past year, I've had mixed feelings about how I have been hearing in noisy situations. Sometimes, I do very well and it's not an issue, other times I am catching myself "faking" my understanding of what others are saying in hopes that they won't catch me. Of course being a teacher, I should be advocating for myself always, but sometimes I just get too tired to ask for clarification.

Last weekend was a perfect example. I went to a surprise birthday party for a co-worker. It was very noisy, the speaker on my right was blaring out Christmas music, but I was still able to understand the entire conversation. A few times, I could tell I was hearing better than those who could hear. This was an odd experience, usually it's the other way around. I was interpreting almost for the other person, but I guess this is where lip reading skills come handy. My audiologist who was at the party even mentioned that I should be a spokesperson for cochlear implants because I was hearing so well in such a noisy environment.

Come Sunday, it's the opposite experience. I am at a restaurant watching football with six other people. Two of them are my close friends whom I have known for 15 plus years, but the others I have just recently met. There were probably three times during the the few hours that I completely could not follow the conversation. I noticed I was becoming tired and it was affecting on how I could understand what was happening. I was actually too tired to ask for clarification and just kept trying to grab onto one piece of information that would help me have some understanding of the topic. I left feeling like I really can't hear well. Granted I didn't get a lot of sleep the night before because my ear was ringing for most of the night, so that didn't help.

So, that brings me back to my title... I have been considering getting a second cochlear implant. I went back to Arizona in July to participate in a study. They found that my hearing aid helps me in noisy situations. In August, I went to Mayo Clinic to have a new mapping. My cochlear implant (CI) audiologist did similar tests and discovered I have higher scores when I am using my hearing aid with my cochlear implant in noisy situations. Based on these scores, he didn't think I needed a second cochlear implant and my hearing aid was helping. He just ordered a weaker magnet for me and I was set to leave.

Right before I left the appointment, I expressed to my CI audiologist that I felt like my left ear with the hearing aid has been plugged up and doesn't provide much benefit. Also, that I was constantly making sure everyone is on my right side when I am walking and sitting down. Many of my friends who are hearing have gotten into the habit of saying, "where is the best spot for you". Very sweet friends, but it would be nice to not have to sit in a certain spot all the time. So, he thought for a minute and suggested we test my hearing with only using my hearing aid.

Five years ago, my left ear scored a speech recognition score of 85% and my right ear was 38%, which was why my audiologist recommended a cochlear implant. At my appointment at Mayo, my speech recognition score on my left ear was 18%!!! Agh! That's a huge drop in five years! I must have become used to listening with my better ear or maybe it is a similar progression that my right ear went through years ago. My CI audiologist was surprised with this number and recommended a second cochlear implant.

So, that was in August. I've had some time to process. My parents' response was "it's your decision and your decision only and we will come to Mayo again if you have it". I guess I've always seen my cochlear implant as a really powerful hearing aid because my regular hearing aid no longer works, so it may be time for another powerful hearing aid. I hinted to my brother and another friend with a cochlear implant that we should get a second one together to make it more fun!

In reality, it is another huge decision. I've been trying to warm up to the idea. I told my family in August that I "might" get one next summer. Then, for my program newsletter, I put in my introduction that I am "hoping" to get another one this summer. Today, after my long time student's IEP meeting, his mom asked me if I will be getting another one and I said I was "thinking" about it. So of course it got me thinking about it again and I just realized that June is not that far away.

A few things bother me about getting a second implant...I don't like the ringing I sometimes get on my CI ear when I am sleeping, the area where the magnet is can become sore (maybe need to try an even weaker magnet), the speech processor is big (the newer ones are smaller), the nausea that I got for a week (might be related to the anesthesia), my hair will get shaved again (will grow back) and I will have two things attached to my head (get over it!). The positives would be... be able to wear hats (hats make the hearing aid whistle), no more earmold or itchy ears from earmolds and I might be able to hear (hopefully better than 18%). I guess I should call to make an appointment huh...

Purrrrrrrrrr...

A few months ago, I moved in with my awesome college friend until I close on my new home. Of course this brings more new sounds to explore, which I thought there couldn't be anymore new sounds! I was wrong...one sounds that seems very interesting to me is the purring of her cats. One of them sits on my lap often and purrs the whole time. I guess kittens purr louder at a young age. It sounds like a little motor and can be pretty loud, ha. I guess this means they are happy, so I shouldn't complain.

On Friday, I will be going in for another mapping appointment. I have been maxed out on volume for a few months now, so hopefully this will allow me to hear a little more. Also, I have been asked to participate in a cochlear implant study in Tempe, Arizona at Arizona State University. From what I understand, they are researching to develop a criteria of when people should get a second implant when they are still benefitting from using a hearing aid on the poorer ear. I am looking forward to the study and getting a break from winter!

Recent Mapping Appointment

I recently had another mapping appointment last week. I was able to make small adjustments and increased the volume. I had more hearing tests with the implant and I am still doing very well with hearing speech through the implant. Also, I had a hearing test on both ears and it looks like some of the low and high frequencies (250 Hz and 8000 Hz) on the implanted ear (right) has some hearing left at the 90 decibels. I guess doctors are trying to save whatever hair cells are good in the cochlea.

On my left ear, it appears that my hearing has dropped a little in the low frequencies. It might be related to allergies, but the eardrum was tested and it was working fine. So, I will need to watch the hearing on my left side to see if it progresses. I guess I qualify for an implant already on the left. I am not sure if I am ready to go through the whole process again right now. I think I will wait until the hearing on the left no longer benefits me anymore that it will not be too much of a risk to do another surgery. I guess lately I have been noticing that my left ear is more dull than the right and seems to be getting worse. Audiologists do suggest that the quicker you get implanted after losing hearing does help with the auditory training, because your brain still remembers sound on that side.

I may need to consider the second implant at some point because it is starting to become more difficult to hear in groups. Last night, I was with 7 of my college friends talking around a table and it was challenging to follow the conversation. I feel like I am getting used to hearing very well on the right but need more support on the left. It's never been fun to get the news of losing more hearing, but I am grateful there is the cochlear implant to improve my hearing because half of my life is interacting with hearing people.

One good thing, Cochlear recently came out with a new speech processor that is much smaller and lighter. I guess insurance companies are supposed to provide a benefit for an upgrade after 5 years. The processors are $7,500, so any benefit helps! Soon, they will have an automatic t-coil switch, so when you put the phone to your ear, the speech processor will automatically switch to t-coil without having to push the button. That will be nice!

Interesting Tidbit

Yesterday, I went to a workshop and learned something very interesting. The electrode of a cochlear implant has 22 channels which are similar to frequencies. These channels are adjusted every time I go in for a mapping to make changes to my speech processor to improve the clarity and quality. Guess how many channels people with normal hearing have?



3, 500!

I find this amazing how much I can hear with the little number of channels I do have. At the same time, this supports why I think students with cochlear implants would still benefit from a sign language interpreter especially when there is a lot of background noise or many speakers. I wonder how many channels an electrode will hold 20 years from now?

If you would like to hear some stimulation's of channels, go to this web page...

http://www.ucihs.uci.edu/hesp/procSim/simulations.htm

ONE YEAR!

Hello friends and family,

Today is the one year anniversary of new life with my cochlear implant. It truly has been an amazing year. Each season brought new sounds and experiences that I will forever cherish. Some of my favorite sounds were the leaves rustling, snow falling on my jacket, rain drops and birds chirping.

One of my biggest fears of getting the implant was that I would lose my identity in the Deaf world and not connect with my friends in that world anymore. I continue to stay involved with Deaf community events and keep close friendships. I greatly appreciate all of my friends, hearing, hard of hearing and deaf for their support along the way. I have learned an important lesson that my true friends will be there for me no matter what.

My life in the hearing world has become much easier. I feel that I am able to have more access to communication and able to follow everyday conversations. I do not feel like I am constantly missing information or working hard like I did before. Sometimes I catch myself being able to understand words in songs or on television without the support of captioning. This is still a very bizarre experience for me.

Lastly, I especially want to thank my loving family for their never ending support throughout this process. It has been a special experience to share with my brother Scotty. I couldn't have done this without you, especially my parents who were there on the day of my surgery and took care of me during my recovery.

Thanks for reading :)

Mapping appointment - almost a year later

Hello family and friends,

I am currently at the Mayo Clinic, I just finished mapping (updating) my cochlear implant. It will be a year in August since I have been activated. This is the last season to experience with the implant and so far I am finding that there are birds chirping everywhere!

The past few months, I have felt like things were a little too quiet and noticed I started to use program two on my implant. This is the whisper program, which is increases the soft sounds in the environment, therefore it was the program I liked the best because it seemed louder than the other three programs. Lately, I have found myself a little more frustrated because I was not hearing well in noisy environments. I actually felt like I went backwards and was hearing like I still had my hearing aids on and straining to hear people. I found out that this is actually a terrible program to use when in loud places like in a school, party or noisy environment.

SO, I am VERY happy to finally have my implant readjusted and boosted! I am hearing things now! I am excited to be able to hear the sounds in my environment again. I didn't realize how much I was missing. Next time, I will not wait so long and go in to get remapped again. Usually when you are mapped, your volume is set at five then it will give you room to increase volume gradually to nine. So, I hit nine a month after I was adjusted last, so I been hearing too quiet for a while. Now, I am at volume three and have plenty of room to increase my volume if I want. It is fun to hear the littlest and most simple sounds again, such as people talking, walking nearby, faucet running and newspapers shuffling are a few I noticed greatly in the past 30 minutes. :) Also, I was able to improve the clarity of my implant as well, so we will see...

Thanks for reading!

Kristine