Tomorrow!

Hello!

Had a great dinner for my mom's birthday at Michael's again. Just found out I need to be at the hospital at 9:30 tomorrow morning. I am a little nervous, but I will be happy when the surgery is over and I can focus on recovering. 

Thanks for your support!

Hello from Mayo Clinic!

Hello family and friends,

I have arrived at Mayo Clinic. Thanks Mandy for driving me here early this morning! I met Dr. Beatty for the first time. He made me feel very calm and relaxed about the surgery. Of course, I am still pretty nervous. I told Dr. Beatty that I was nervous and he said he would be nervous if I wasn't nervous, ha. I would describe him as very jolly and patient. He took the time to explain the procedure to me, what to expect and a little more about the internal implant.

Tonight, I will call the Mayo Clinic's automated patient service line at 8:15 to find out my surgery time and when to report to the hospital. I guess the sickest and youngest patients are usually scheduled first. Dr. Beatty thinks it may be around 3:00 p.m. because he is implanting an 11-year-old first.

He explained that I need to stop eating after midnight, then stop drinking non-clear liquids six hours before surgery. I will meet with the anesthesiologist when I arrive at the hospital. Hopefully, something can be done to reduce the nausea I always feel after surgery, but it could also be related to putting a foreign object in my body or operating in the ear which is the balance center of the body.

The surgery will take about two hours. There is an hour of prep where they will shave my hair and mark where the implant will be located to match my other side. Dr. Beatty explained that his incision will look like a hockey stick instead of a line like my first implant. He thought my scar looked good on my right side. My ears looked healthy, so he recommended to cancel my preoperative evaluation visit at 12:45.

Also during surgery, I will have probes on my facial nerves to be sure nothing is being affected when the incision is made. Once the implant is in place, they will test it before closing my head to be sure all 22 electrodes are working. If three or more fail, then he will replace the implant. He supported my audiologist's recommendation of the 422 internal implant. It does not cause as much trauma to the cochlea as the Contour implant which is in my right ear. I guess it is the same implant but has a thinner and more flexible array of electrodes. The array is easier to insert in the cochlea through the round window. The 422 has been being used for a year and has been successful. The previous internal implant, the 512 was discontinued due to the seal breaking.

Dr. Beatty has a ten year history of doing the cochlear implant surgeries. He has not had any patients report that they wished they didn't get a second implant. I may not have the same "geeze whiz" experience of when I got my first implant because I am able to hear most sounds by now, but I should be able to hear better in noise and localize which direction I am hearing sounds.

After surgery, I will need to keep the ear free of water and do not do any heavy lifting for a few weeks. I may feel a sensation in my jaw when I bite due to the implant being placed on the muscle. The surgery is usually outpatient, so I will probably not stay overnight at the hospital depending on how I am feeling and if it is late in the day. I have an appointment scheduled with Dr. Beatty on Wednesday morning 8:15 to have him look at the incision, etc.

That's all for now. I meet my parents in an hour at the hotel. It will be nice to have them here to keep me distracted. Also, we will be celebrating my mom's birthday tonight, so that's always a treat to celebrate it with her. Thanks for reading!

One Week from Today

Hello family and friends,

Thanks for following my journey. A week from today, I will be meeting with Dr. Beatty, who will be implanting my second cochlear implant next week Tuesday. I haven't had a chance to share information about my recent appointment at Mayo, it has been busy! 

On May 10th, I met with my audiologist, Dr. Sladen who has been very positive about my second cochlear implant. He explained to me about the most recent internal cochlear implant made by Cochlear, the 422.  The 422 internal implant has been successfully implanted for the past two years at Mayo Clinic. The 422 implant preserves the residual hearing due to the electrode being more thin, flexible and less invasive when it is inserted in the cochlea. It is recommended that I get this specific kind of implant because I continue to use a hearing aid and can hear some low frequencies on my left ear. 

Next, I ordered my speech processor (outside equipment) and some accessories (batteries - standard and compact). I will be getting the Nucleus 5 speech processor, which my brother Scotty and friend Xavier both current use and reported that it sounds much better than the Nucleus Freedom processor, which I currently use on my right ear. Also, I would be eligible for a free upgrade of the Nucleus 6 which will be bimodal. Bimodal means that the amplification will have both a hearing aid for the low frequencies and a speech processor for the internal implant.

Dr. Sladen also asked if I had a medical bracelet for my cochlear implant. There was a situation where a cochlear implant user was in car accident and the paramedics mistaken the implant for parts of a car and have taken it out by accident. I thought I would share this information with others individuals with cochlear implants. 

Lastly, my audiologist explained some of the benefits of having bilateral (both ears) implants. Some of the benefits are listening easier, be more relaxed when listening, will be able to localize where sound is coming from and hear better in situations with a lot of background noise. I am hoping I will have all of these benefits and more!  

Thanks for reading! 

Surgery is rescheduled to July 9th

Hi family and friends,

My surgery has been rescheduled to July 9th with a different surgeon. I did not have a positive experience with the original surgeon for June 6th and advocated for a new surgeon.

Dr. Beatty, who implanted my friend Xavier will do my surgery. I look forward to meeting him soon!

Stay tuned for more information. It has been a crazy time of the year! It is probably a blessing that the surgery has been rescheduled because I would have had the surgery this Thursday and there is still way too much to get done before the end of the school year!

Thanks for your support!

Kristine

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!