Thursday, April 25, 2013

One Week Down, Three to Go

It's amazing how fast a body heals and rejuvenates itself. One week ago I had my surgery. Even two days ago, I was feeling well, but lacked energy and was basically a couch potato. Yesterday I had my follow-up appointment with my doctor. It was the first time in a week that I had been out of the house. My mom took me to lunch at Panera and then drove me to my appointment. It was nice to have a little mother/daughter time. We don't often get to do that. Dr. Benson was extremely pleased with how the surgery went and thought my incision was healing nicely. I no longer have to wear any bandages and I am clear to use any hair products! Yeah!

I feel better each day. Showers are my favorite thing and each night I am getting better sleep.  Mornings will be hard when I have to go back to work next week. I have been sleeping in each day and then I am in some pain because my meds have worn off during the night. I am not getting up in the middle of the night to take pain medications any more, so that makes for an unpleasant morning. Right now it's OK to be slow and lazy in the morning. I hope I am able to pick up the pace next week. I have never been a morning person, so that will be a challenge. My energy is slowing returning. I made it through the day without a nap yesterday, but that was only because I was not home!

My outer ear is still numb in some places and sticks out. I certainly hope it will lay flatter against my head once the swelling goes down. Other than that and some bruising, one really can't see any difference from before. I still have that funny taste in my mouth. I asked at my appointment yesterday how long I would have to deal with that. He said anywhere from 1 to 12 months. Not the answer I wanted to hear. While it is not the most terrible side effect, it is annoying and definitely takes some enjoyment out of eating. Maybe this will be my diet plan for the next year! :)

One week is under my belt and I have three more weeks to heal before my device is activated. These three weeks will be tougher than the last one. I will have to venture out of my quiet, relaxing home and into the loud, real world and function with just one hearing ear for three weeks. I think this is one of my biggest fears with this procedure. Next week will be a challenge. Yesterday, Dr. Benson asked if I felt like I had any residual hearing left in my right ear. I honestly don't hear any change from before. Good or bad, that either means that my hearing was so bad in that ear, that I don't notice being completely deaf now or that he was able to preserve any residual hearing that was there. Either way, I basically cannot hear in the right ear in everyday circumstances. That will be my reality for just three more weeks. I can do it!

I can do all things through him who strengthens me.
Philippians 4:13

Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.
Deuteronomy 31:6

Saturday, April 20, 2013

Surgery Day

Surgery day (April 18) went well. We arrived at the hospital at 7:15 am. Our pastor came to the hospital for meditation and prayers before surgery and I ran into a friend in the waiting area and I spent some time catching up with her while we waited. I went into surgery around 10:00. I remember waking up in recovery about 3:00 pm. I was then taken to the post-surgery room and Ken joined me. Coming out of the anesthesia was difficult. I had nausea and was struggling with staying awake. I just couldn't keep my eyes open, literally. I had the most wonderful nurse, Alison. She was friendly, kind and did anything she could before and after surgery to make me comfortable. 4 stars for service! We left the hospital at about 6:00 pm and I was feeling a bit more alert.

I was bandaged up with a velcro protective cup around my ear that other CI recipients have dubbed "the jockstrap". I honestly cannot think of a better name for it. That's exactly what it resembles. My jockstrap and I will be buddies all weekend long.

Friday was a lazy day of resting and letting "Dr. Ken" take care of me. The nausea and dizziness had subsided and I was feeling pretty well for the most part. I have been taking my medications regularly so pain has not been a problem so far. I did not have much of an appetite on Friday, but ate enough so that I wouldn't get nauseous with the medications. My jaw hurt when I chewed and I couldn't open my mouth very far. I also have had a funny taste when I eat. I am not sure how to describe it - some have said it's a metallic taste, don't know about that - just an odd flavor. I also had a couple of nosebleeds. I was prepared for all of these things from talking with the doctor and other CI recipients, so nothing earth-shattering.

I had Ken take a picture of my incision when he changed the dressings because I couldn't see it. I wondered how big it was and what it looked like. It was not pretty so I won't be sharing the photo, but maybe later when it has healed some more, I can show you what it looks like. I have an incision the length of my ear right behind the ear where it attaches to the scalp.

Forty-eight hours after surgery, I am still doing quite well. Today, however, I have not had much energy and did more napping than yesterday. My jaw is not sore anymore, but swelling and bruising have shown up on the right side of my head/face. Between not being able to wash my hair and the bruising and swelling, I am not looking so hot. Can't wait for the 72 hour mark when I am permitted to wash my hair! I have taken bubble baths everyday which made me feel so much better, but the hair washing thing is awful!

Thank you to all of you who have had kind words to say and offered help in some way. Times like these let one know how wonderful the people in their lives are. YOU are wonderful!

Thursday, April 18, 2013


I have scheduled this post to be posted at 8:45 on Thursday morning. At that time I will be in surgery. I hope this post reminds you to do one thing. Pray.

Pray for me and the medical staff in surgery.
Pray for my husband sitting in the waiting room.
Pray for my beautiful children who are at school.

And while you're at it, just keep on praying.

Pray for those who have disabilities.
Pray for those who are battling cancer.
Pray for those who are homebound.
Pray for those who are depressed.
Pray for the single parents.
Pray for the children who have lost their parents.
Pray for the parents who have lost their children.
Pray for Boston and all who have been effected by the terror.
Pray for the starving.
Pray for the enslaved.
Pray for the homeless.
Pray for the lonely.
Pray for those who serve others selflessly.
Pray for the persecuted.
Pray for those who are sick.
Pray for those who govern.
Pray for your family.
Pray for your friends.
Pray for your enemies.
God knows what's on your heart.

Wednesday, April 17, 2013

My Fears and Some Wonderful Encouragement

Tomorrow is the big day. I am excited, but a little scared.

I am not scared of the implant.
I am not scared of the sounds and loudness I will hear.
I am not scared of the surgery. (OK, maybe a smidge.)

What I am scared of is what music will sound like. Will it sound like it did before? Will I hear the high frequencies clearly? In my research, I have read that CI recipients can hear and enjoy music. But, I have also heard that music and voices will sound different. Even my audiologist has told me that.

What does that mean? HOW will they sound differently? That is probably my greatest reservation going into this adventure. I want to hear melody lines. I want to hear the entire range of frequencies in a piece of music. I want to be able to hear the alto part and sing along. I want to be able to hear my own voice. I don't want voices to sound like robots. I am sure they won't, but that keeps going through my head. Someone said that voices and music with a CI sounds more electronical, someone even mentioned Darth Vader. My husband might think that cool. So NOT. I'm sure I won't know until my device is activated and I hear the sounds.

I don't doubt that I will hear better with this implant. I know I will. I am sure that understanding of speech will be better. (How soon depends on each individual, I am learning.) But what I doubt and question is what MUSIC will be like. My heart longs to enjoy music and singing like I did even a year ago.

One thing that has become clear very quickly is that every CI recipient walks a different path and the journey is so individualized. As I talk to others who have experienced this same technology, I can learn from them and share with them, but each day and sound will be mine to experience in my own way.

And so tomorrow I jump in. Today (and always), my friends, family, and colleagues have been so supportive. Today I was showered with flowers and candy from my third grade buddies, hugs from my fellow teachers, and so many phone calls, Facebook messages and emails from everyone wishing me good luck on my surgery and the best of results. Thank you. It makes me feel loved and gives me confidence to keep taking the steps I need towards greater hearing.

Monday, April 15, 2013

Spell 'cochlear'

Ten Year Old Cochlear™ Nucleus Implant Recipient Heads to the Ohio Regional Spelling Bee

As a teacher and a cochlear recipient, I thought this article was so cool. It happened right here in Ohio, too! This is just one more great story of why this technology is so life changing. Click on the link above to read the article. Enjoy!

Saturday, April 13, 2013

How Does a Cochlear Implant Work?

Well, I had my pre-op appointment with my doctor yesterday. He looked over my CT scans and file and is very excited about the surgery. Dr. Benson is kind, personable and enthusiastically wants to help his patients. He answered all my questions and made sure I was ready for the surgery. I am in good hands.

OK, so I am a teacher. Expect to be educated once in a while on this blog. I have found that many people have heard of cochlear implants, but they do not understand what they are or how they work. My device is a Cochlear Nucleus 5. The Cochlear website has a terrific explanation of the components of a cochlear implant and how it works. Please check out this link to learn more of how it works. It is truly a miracle of science!

How does a cochlear implant work?

The surgery will take two to three hours. He will make a cut behind my ear to insert the electrode into the cochlea and the magnet under the skin behind my ear. I will be bandaged up in a tight bandage and sent home. It is an outpatient procedure. I will have to return for a check up the following day to have the bandage removed. Of course my vanity had me ask how long I had to wait to wash my hair. Three days. UGH! If you see me anytime next weekend, don't expect Beauty. I will more likely be The Beast. Dr. Benson said I would have some pain, funny tastes in my mouth, and possible bloody noses. Following surgery, I will have to wait four weeks before the device can be activated so that the nerves in my ear can heal. During that time and whenever I am not wearing the sound processor, I will be completely deaf in my right ear. After my device is activated, I will wear the external sound processor, which looks much like a hearing aid, to be able to hear. I will have many mapping appointments with my audiologist to program the device for my best hearing. I will be able to control programs, volume, etc. from a remote. When my children get too noisy, I can just take off my sound processor and enjoy peace and quiet!

Thursday, April 11, 2013

Just one week until...

Wow. "Hear" I am. Just one week until my cochlear implant surgery. It all still seems a bit surreal. I am excited and scared at the same time. I want to be able to hear so badly. I have dealt with hearing loss my whole life, but it has never effected my daily life in such a negative way. I am desperate to be able to do "normal" things like have dinner with friends in a restaurant, attend parties, have conversations with my third grade buddies in our often noisy classroom, watch TV, listen to music, or sing. SING. I really miss singing.
For those of you who are not familiar with my hearing history, let me bring you up to speed. I have had a hearing loss in both ears since I was a toddler. It has been told to me that the cause was probably a fever or infection. I often had ear infections, did the tonsils out and tubes in. I have worn hearing aids since seventh grade. I have never let my hearing loss stop me from doing something I want to do. Until now. In November of 2012, I had a sudden loss of almost all hearing in my right ear. I went to an Ear, Nose and Throat specialist (ENT) and he did several tests to determine the reason for the loss and some treatments to try to regain the hearing. Good news was that he found no tumor or other horrible thing causing my hearing loss. Bad news was that it was probably permanent. The hearing loss was so profound that I could no longer wear my hearing aid in that ear. It just didn't serve any purpose. But, my ENT, Dr. Benson, thought that I was a good candidate for a cochlear implant.
I underwent 3 hours of hearing tests with audiologist, Dr. Bernath, on December 27 to determine if I qualify for a cochlear implant. If I did not qualify under regular FDA guidelines, they felt I would be a likely candidate for a study to expand the implant guidelines. It was very disappointing to learn that I did not meet the guidelines for either one. Dr. Bernath suggested that I wear a high powered hearing aid for one month and then return for testing. This had been done with another patient and he then qualified the second time. I was fitted with a Phonak Naida. This hearing aid was much stronger than my Phonak Audeos and it sent vibrations into my head that made me dizzy. After an adjustment, it was tolerable, but not pleasant. I wore this for one month and was most happy to send it back at the end of that time period. It had not helped me hear anything better. It only sent vibrations into my skull every time someone talked or a sound was made. It was exhausting spending all my energy trying to hear and this hearing aid just added distractions. After the second round of testing I was heartbroken to learn that I still did not qualify. I was so borderline. For example, one of the tests required me to identify 25 words or less out of 100. I correctly identified 27. Ugh! So on January 30 I did not qualify for a cochlear implant according to FDA guidelines and I did not qualify as a candidate for the study. Dr. Bernath said she was still going to submit my request to my insurance. Although insurance guidelines are similar to the other targets I failed to hit, she was going to recommend that it would be beneficial for me to have this surgery. I was told that I could be reevaluated in one year to see if I would qualify again. ONE YEAR!?!?
At this point I was so discouraged. I could not continue to do my job if my hearing stayed this way. I couldn't go out with friends. I couldn't hold conversations in the car. I couldn't enjoy music. I was so frustrated. And so the waiting game began.
A Chris Tomlin concert in early March lifted my spirits and brought me hope. Of course the music at the concert was so loud that I had no trouble hearing. And the message of the music reminded me that I have a God that holds me in the palm of his hand no matter what happens in this world. He has a perfect plan for me that may not be the same as my plan for myself, but is good and perfect in His time.

In Your everlasting arms
All the pieces of my life
From beginning to the end
I can trust You
In Your never failing love
You work everything for good
God, whatever comes my way
I will trust You
                                              Sovereign (Chris Tomlin)

Near the end of March, just before my 40th birthday, I received the news that I was approved for the cochlear implant. I was overjoyed! In the last month, I have been so busy with tests and insurance "stuff" to be ready for this day. One week. I am scared. But I am willing to take that leap of faith that this will be a good and glorious blessing for me and those I love. I know that the weeks and years to come will not be easy. Mappings and training my ear to "hear" again will be hard work. But the possibilities are so promising! Hear I am!