Pre-Operation Appointment - July 2nd

I arrived into Rochester an hour and half early! I feel like I am turning into my brother David who is always obnoxiously early for everything :). I went to my first appointment, which was the CT Scan. I told them about the screws I had in my jaw from my previous surgery and they said that a CT Scan would be fine, but not a MRI. I laid on a platform with my head secured by a band across my forehead. They marked the right ear by taping a thin object to my cheek.

The CT Scan took about five minutes. I just had to lay still while my head was moved into a center of a large donut looking machine. Then a camera inside spun around to take pictures. Afterwards, I walked back down to the Mayo Clinic Atrium and heard a man singing at the top of his lungs. When I looked down from the balcony, there were people standing around listening. He sang songs like Amazing Grace, America the Beautiful, The Rose while someone played on a black grand piano. He asked the crowd to join in and people did, it was pretty powerful, of course I got tears in my eyes being the sap that I am. I found out later that people come on a daily basis to sing for the crowd. It is really uplifting. I continue to be impressed with the services here especially the wireless Internet which I am currently reporting from.

My second appointment was for my preoperative evaluation. I arrived at the check-in counter for my appointment. I could not understand the woman at the desk and asked her to repeat and explained that I was hard of hearing. She then, started talking VERY loud, slow, enunciating every word! I stopped her after a few words to explain that she can just use her regular voice. I thought it was a little funny. I have actually presented to younger students and adults about this very behavior, ha.

Anyways, I had all the usual check ups with weight, height, blood pressure and oxygen levels. They are VERY thorough, I had a nurse and a physician ask me about my health, medical and surgical histories as well as my daily habits. They asked who would be with me on the day of the surgery. They got both of my parents names and the hotel they are staying at. Then, she asked for their cell phone number. I laughed since my parents "own" a cell phone, but they never use it, not sure if they know how to! I guess both the nurse and physician will submit their own reports on my health history to make sure nothing was missed from the interview. Next, the anesthesiologist came in to do his evaluation. He checked my lungs and asked more questions about my medical history. It looks like I will be given the anesthesia through an IV. After his evaluation, I was declared as healthy to have the surgery! Yay!

Alright, I am back at home ready to report about the rest of the day. When I arrived home, I took an hour and half nap (I was planning to only sleep 20 minutes!), I was so exhausted! Imagine that, an hour nap at 6:30 pm! Nuts! Okay, back to the Mayo visit...

For my third appointment, I met with Ann Peterson for my Cochlear Implant Consultation. We picked out colors for my behind the ear speech processor and the magnet (I will be posting a blog soon explaining cochlear implants). I picked the same color that is used for my hearing aid. It comes in a variety of colors like pink and blue, but I thought that would be a bit much :). My implant is the Nucleus Freedom by Cochlear, same as my brother's implant. I received a DVD and manual on how to use my speech processor. Also, I got an identification card to keep with me in case I am in an accident to be sure they are aware that I have an implant.

I found out that patients can be hooked up the day after surgery if they wish. I have decided to wait a few weeks so I am feeling 100%. I will have an appointment 2 – 3 weeks after surgery once the swelling has gone down to put the magnet on. I will have a two day appointment with 2-4 hours of sound mapping (identifying sounds that I recognize) on each day. Depending on how I do at those appointments, I may need come back a week or a month later. Most of my appointments for sound mapping will be within the first 3 – 6 months. People have shown success with the bimodal method which is when two modes are used, the hearing aid and the cochlear implant. Ann suggested that I use both my hearing aid and implant during the work day and in the evenings use the implant to train my brain to the new sounds in my environment.

Finally, my last appointment of the day was with Dr. Neff. He explained the major risks that come with surgery such as jaw pain, bruising (one of his patients got a black eye!) facial injury which is 1 out of 1,000 cases and meningitis. None one of Dr. Neff's patients has yet gotten meningitis after surgery. He has performed a couple of hundreds of surgeries and has not had to remove an implant yet. Dr. Neff explained that he had one patient who had a head injury after implantation and the implant was damaged. Then Dr. Neff said my CT scan looked good and there was enough room to insert the implant in the cochlea. He showed me on his computer monitor the cochlea of both of my ears with the normal formation of two and half turns.

Prior to surgery I will have 4 inches shaved behind the ear. I am happy that I am getting shaved so there is no mistake on which ear should be implanted on. I have heard the horror stories of people getting the wrong knee operated on or kidney taken out! The surgery will take about 2 -3 hours. The night before the surgery I need to call a phone line between 8:30 – midnight to get my scheduled surgery date, so I will not know until the day before.Depending on when the surgery is scheduled, I may be able to go home that day. If it is later in the evening, then I may stay overnight at the hospital. Dr. Neff said it is probably good to go home so I am not exposed to other patients in the hospital.

A follow-up appointment will occur about three weeks later. I asked about motion sickness after implantation, my brother Scotty had a bad case of it. Dr Neff said it does not happen often with his patients. I am planning to go home to Sheboygan with my parents after the surgery to recover. Hopefully I will be up for the six hour car ride! Then, I got another informational brochure on the implant.

That was it! I am all set for this surgery! I don't think it has really hit me that I am actually doing this. I think as time gets closer it will become more real. I am excited and very nervous at the same time. Thanks to my family and friends for reading and all of your support!

Meeting Dr. Neff

My last stop of the day was at the Department of Otorhinolaryngology to meet Dr. Neff, the cochlear implant surgeon. Amy and I arrived at the waiting room, it was massive! The largest one I have ever seen. I was given a pager to let me know when I should report to the front desk for the appointment. Once the pager went off, I went to a very small office within the clinic. The first doctor came in, asked me a few questions, looked in my ear, felt the bones behind my ears. It turned out he was not my doctor, he was working on his residency.

Next, three more people came into the tiny room. It was crowded! Dr. Neff introduced himself and I had no idea who the others were (it turned out that it was a nurse and an audiologist in case I had any questions). Dr. Neff was all business and explained things with a lot of facts. Amy and I asked many questions and he answered them confidently. One thing I remember is that Mayo does 100 cochlear implants within a year. Dr. Neff explained the process and then asked when I wanted to schedule the surgery. WHOA! I haven't even decided if I am going through with it! Yikes! I was not expecting that at all. It was odd having four people look at me while I fumbled with the question. I told him I needed to think about it. He suggested that we set a date in case I was interested. So the date was set for May 28th.

Dr. Neff explained that I needed to get the Pneumococcal (PPV23) vaccine prior to the surgery to prevent Meningitis after the surgery (I got the vaccine the following week at my clinic). Also, he explained that I needed a CT Scan to make sure my cochlea is formed correctly with two and a half turns. Fun fact for you...the cochlea is found in the inner ear, it is a spiraled hollow bone. Cochlea comes from the Latin term for snail. If my cochlea turns only one and a half or one turn, then it becomes a little bit more risky. I would stay overnight one night after the surgery. For two weeks, I am to take it easy and not lift anything more than 10 pounds due to all the muscles connected to the ear. After my incision is healed, I will be able to get "hooked up" to a speech processor. This is anywhere from 3 - 7 weeks after surgery. Oh, the whole process costs a whopping $55,000!! Agh! Luckily my new insurance, Health Partners will cover most of it, otherwise I was going to do car wash fundraisers or benefits. My mom had just recently quit smoking after 50 years, I am so proud of her, anyways, my parents agreed that whatever they saved from buying the cigarettes would go to the surgery. I thought that was very sweet of them.

Anyways back to the Mayo visit... Amy and I headed back to the Twin Cities. I called my family and told them that I was a candidate. My Dad told me that it is ultimately my decision that he will support me either way. Then, Amy called our personal audiologist, Claudia to give her an update on the visit. During that time, I told Amy and Claudia that I am pretty much considering the implant. I surprised myself of my decision, but I thought why not try it, since my right ear is not providing huge auditory benefit for me and it has been a frustrating year hearing my students. Wow, a huge chapter has just opened in my life. Hopefully, this is the right decision!

Am I a Candidate?

My first hearing evaluation with the audiologist produced an audiogram (chart that documents your hearing, see attached photo) that was very similar to what my personal audiologist had for me. For those of you who may not be familiar with audiograms, I will try my best to explain it to you. Decibels demonstrate how loud or soft a sound is with 120 being the loudest like a jackhammer or an airplane engine and 0 being soft like leaves rustling. The top of the audiogram shows the frequencies, 125 Hertz are low (z, v, j, m, d, b) and 8000 Hertz are high (f, s, th). Normal range of hearing between 0 to 20 decibels. The x's indicate the left ear and the o's for the right ear. So according to the audiogram, I continue to have a bilateral severe to profound sensorineural hearing loss.

Next, Amy and I tackle the incredible maze of tunnels in the lower level of the massive complex to locate the Mayo Hearing Clinic for my hearing aid evaluation. It was a quick evaluation of my hearing aids. Tiny plastic probes were put inside of my ear canals, then my hearing aids were inserted with the probe inside. Then auditory signals were sent from a speaker in the room. The probes measured how my hearing aids responded to the signals. After that was completed, it was declared that I have fabulous working hearing aids (thanks Claudia!) and I can move onto the next step!

Then, I meet with cochlear implant audiologist again for the big test to see if I am indeed a candidate for the implant. The set up for the sound booths are very high tech. The sound booth I was in, had a lot of small rectangular speakers along the wall. I had to face the speakers with a video camera on me. It was kind of weird having others watch me and not be able to see them. In Ann's sound booth there was a lot of technology with a computer documenting all my responses and a monitor for the video camera.

For all the tests, I was able to wear my hearing aids, which is probably why it was important they were working properly :). I was given three separate speech recognition tests with sentences, words and sentences with background noise. The tests were administered through the computer then through the speakers in my booth. Each item on the test was given with a variety of voices, male, female, high, low, children and adults. The sentences came from different directions in the sound booth. It was truly a realistic measure of how I hear in everyday conversation. For each individual test, I was tested with each ear individually and then together. So, basically I had to do nine speech recognition tests. My job was to repeat as much as I could of what I had heard. I felt like I was talking in gibberish most of the time. I believe the computer accepted the phonemes (smallest unit of language) that I repeated.

By the time I was done, I was completely exhausted, mentally and physically. It took a lot of energy to give my best effort to listen intently. The most difficult test was the one that included the random background noises, I could not recognize many voices except for the deep male voices. Throughout the evaluations, the audiologist told me to shut off a hearing aid for the individual ear tests, which I did. A few times after the test started, I would reach up to fiddle with the hearing aid to make sure it was shut off and the other hearing aid was turned on to the right volume. The audiologist had to stop the test and come into my booth to make sure I wasn't turning the other hearing aid on. I wasn't trying to cheat, I swear! :)

My friend, Amy was also in the booth with the audiologist and noticed my percentages go up and down rapidly throughout the tests. It was hard to tell what the outcome would be until the very last sentence was given on the last test. Are you ready to find out my score? Drum roll please... I scored a 58%! So, I made it for the cutoff, but just barely! It took a little bit to sink in. I felt a little better knowing I am near the border of becoming a candidate and that my hearing loss is not that drastic.

The audiologist explained the results more visually on paper and stated that my percentage of 10.5% for understanding with the background noise present was within the average range of someone with a cochlear implant. So potentially, there is a possibility that I would be able to have more understanding with an implant on in a noisy environment. She recommended that I have the cochlear implant on the worse ear, right and continue to use the hearing aid on my left ear. High frequency sounds with a cochlear implant, sound "ugly and squeaky", so the left hearing aid would pick up those high frequency sounds. Together with the hearing aid and implant the gaps of language would be filled in. Lastly, she stated three reasons why I am a good candidate for the implant: I've had good hearing with my hearing aids for most of my life, I have usable hearing after 4000 Hertz and the time period between losing my hearing to getting an implant is not too long. My auditory nerve is still good and my memory of hearing will be strong as well. She gave me information packets of two cochlear implants to choose from: Nucleus Freedom by Cochlear and Harmony by Advanced Bionics. My brother Scotty was implanted with a Cochlear brand implant and has had great success with it. At this point I am feeling very overwhelmed and not yet 100% committed to implant surgery. Next, we meet with the cochlear implant surgeon, Dr. Neff.

First Visit to Mayo Clinic

My first appointment at Mayo Clinic was on February 27th. I had mixed feelings about going through the process. I was nervous and unsure of what to expect. At the same time, I was excited to see the "Mecca of the Medical World". I was very fortunate to have my co-worker and friend, Amy Erickson join me for trip, it made the whole experience more exciting and bearable. We stayed at the famous Kahler Hotel, which was undergoing much needed renovations. Our room appeared to have not been touched since it opened in the 1920's. I wish I could say I was joking, but I am not. It had mirrors on the walls with paneling on the opposite walls and two twin beds. It smelled very stale and musty. Needless to say, we did not sleep very well.

Anyways, enough about the accommodations :). My first appointment was at 8:00 am for the cochlear implant consultation. I met with the audiologist, Ann Peterson. We did an informal interview. She asked me to describe my hearing loss, history of loss in the family and how I function with my hearing loss. Ann explained the process of qualifying for an implant. I would get a hearing evaluation, then go to the hearing aid clinic to be sure my hearing aids were working properly. I guess sometimes people arrive at Mayo and discover that they had inadequate hearing aids for their hearing loss and that is why they do not hear well! I was positive my hearing aids were appropriate for my loss because I have the best audiologist around :).

Next step, if I pass hearing aid check, I would do more hearing evaluations with the audiologist. On the evaluations, I would need to score 60% or worse to qualify for the implant. Then the audiologist mentioned that there may be a possibility that I do not qualify due to how much I can hear with my hearing aids. I thought to myself, "Great! All of this effort and I may not qualify!" I was a little nervous knowing that I may not even have an option of improving my hearing and that I might need to adjust to the way I currently hear. I wish there was a powerful hearing aid out there to just plop on my head. I am a little scared to have something drilled into my skull. Luckily, I had my upper jaw surgery three years ago which they broke the jaw into three pieces then screwed it back together, so this surgery should a breeze. Okay, back to the process of qualifying... Once all my hearing evaluations are completed and done, if I scored 60% or worse, then I can move onto the next step to meet with the cochlear implant surgeon later. If I score 60% or better, then I would return home without going any further.

Audiology Appointment

I returned to Minnesota and  followed through on my commitment.  I set up an appointment with my favorite audiologist, co-worker and friend, Claudia H. on January 8th.  Claudia pointed out to me that it has been a year and half since my last audiology appointment.  I told her about my last visit with my parents and how I wanted to be sure my hearing aids were working properly.  I had expected to find the same results as the past evaluations and thought that I probably needed to readjust my hearing aids or send them in for repair.

I sat in the sound booth listening intently for the beeps and pressing the buttons when I heard them.  I became a little nervous like I always do and felt there were longer pauses between the beeps, which meant I could not recognize some of the beeps that she was sending me.  I kept telling myself, that I get worked up like this every time I get my hearing test and it will all turn out fine.  Then, Claudia did the speech recognition test.  I felt like I was repeating nonsense words and saying the same words over and over.  Claudia tried a different set of words and again, I gave my best effort.   

When I walked out of the booth, Claudia went to pull my chart and looked at all my previous audiograms from the past 9 years.  I started to become very nervous and tried to calm myself down. I looked at the recent test and the hearing levels looked the same as my previous evaluations... a severe to profound hearing loss.  Then, she looked at me and said, "you are not going to want to hear this, but I think you should see if you are a candidate for a cochlear implant".  Wow...this is exactly what I have been dreading all of these years.  I worried that I will eventually follow my brother's footsteps and lose hearing like he had at my age.  I was in shock and tried very hard to hold back the tears.  

Claudia did a wonderful job explaining my current hearing situation.  She explained that when I started working in the district, I was able to understand speech on both ears with 95% accuracy.  My recent test indicated that my hearing levels were the same, but my speech understanding had changed. On my left ear, I can understand 85% of the information and my right ear was 38%.  A huge drop! My right ear was almost useless.  Basically, I am able to localize and detect sound on my right ear, but it does not help me understand information.  Then, I remembered back to winter break when my Dad questioned me of what my Mom had said.  I realized that my parents were both on my right side. My Dad's observations were correct (of course, ha).  I greatly appreciate the honesty of my Dad and Claudia.  

Questions...

My Wonderful Parents

As a child, I never saw my hearing loss as a problem or an issue.  My parents never treated me any differently.  I was raised like any other child regardless of my hearing situation.  They instilled in me that I can accomplish anything and my hearing should never stand in my way.  I wouldn't be who I am today without their love and support.  I feel I have done well with balancing my life between the Deaf and hearing worlds.  In the past year, it appeared things were becoming much more difficult in the hearing world.  It seemed that I was not able access information as easily as I used to.   

I remember the first time my parents asked me if I would consider getting a cochlear implant. It was Fall of 2007.  I was telling them about a young child who recently got an implant and the parents did not want the child to associate with the Deaf Community.  I shared that I believed the child is still deaf regardless of the implant.  Then, we talked about how well my brother Scotty has been doing with his implant.  Afterwards, my Dad asked me, "would you get an implant?"  My parents have never posed this question to me and always wanted me to make decisions on my own.  They always respected my thoughts and would support me no matter what.  I simply told them, that I am not a candidate because I can hear very well with my hearing aids.  My parents accepted my answer and that was the end of the conversation.  Deep down, I was not ready to go down that route and was fine hearing the way I am.  I know my parents want me to be happy.  We have seen how much more confident Scotty has become with his implant and I am sure they wish the same for me.  A few weeks after this conversation, I went down to Arkansas to give a presentation on hearing loss to Tyson Corporation.  I was asked the question again from a member in the audience, I responded the same way, "I am not a candidate for the implant, I hear too much with my hearing aids", but secretly, I did not want to consider it.  

Over winter break, another question was asked... I was sitting in the family room, with both of my parents sitting far to my right.  My mom said something to me and I think I did the "deaf nod" (when you nod your head and pretend that you heard everything...terrible, I know. Even as an adult I did this.).  My dad asked me if I heard what my mom had said and I got a little crabby and I said that I did.  He asked again what she had said.  I tried to repeat as much as I could and thought, geeze am I at an audiology appointment?!  It turned out that I had the information all wrong and did not understand a word.  So, at this point, I was crabby and frustrated that I reminded my dad that I am hard of hearing and that I cannot hear well.  Also, I told him that the television is on too loud, mom did not have my attention and I was not looking at her lips. Then, on top of that, I said I have a high frequency hearing loss and I don't hear women's voices very well.

It was not very convincing, I should be able to recognize my mom's voice like I always had!  I admit I was rude by stating those reasons.  I felt guilty for my behavior and know that my dad means well and sincerely cares.  My dad responded that he just wanted to be sure we are doing everything we can to help me hear.  Well, I felt even worse and made a commitment to follow-up with my audiologist as soon as possible.