Monday, June 27, 2011

Activation Day - June 13th

The day I had been looking forward to finally arrived.  Monday, June 13th.  This visit would be a two part process, the initial activation on the 13th to get my ear used to hearing again, then an adjustment the next day.  Believe it or not, I was more anxious about this day than I was about surgery.  All that work and preparation, will it pay off?  What will I hear?

The appointment wasn't until 3pm, so we didn't need to travel to Rochester the night before.  We drove down that day, checked into our hotel with about an hour and a half to spare.  This time we decided to stay at the Marriott.  The room was pleasant enough and even closer to the Mayo Clinic than where we were before.  I couldn't wait!  I can't wait! 

We were pretty early getting to the first appointment, but what else could I do?  I was excited!  Of course, our wait was that much longer and my appointment was late on top of that.  But everything is worth it.  When my appointment finally came, Dave & I were led into the audiologist's office and we sat down in our chairs.  I could see the suitcase with my equipment nearby.  She came in and I was all smiles, I am ready to go.

After testing the magnet used to attach the external part to the internal part, the device was placed on.  The first magnet wasn't strong enough and the audiologist suggested that I may still be somewhat swollen from the surgery, down the road we may not need as strong of a magnet.  After testing the device on her computer, a few loud beeps came through that surprised me and caused me to jump in my chair a little.  We began testing.  She played tones in a series, she would play each tone 2 - 5 times and I would tell her how many times I heard that tone.  She said I did this very, very well.  If I could hear it, even the smallest sound, I usually counted them correctly.  Finally, she "turned it on". 

I'll be honest, I had no idea what to expect, but I didn't expect it to be so confusing.  The best way to describe my hearing is the constant pinging of a pinball machine.  I was warned that my brain needs to relearn to hear sounds in a different way.  I really, really have my work cut out for me!

She gave me a few pieces of equipment along with a couple of instruction manuals to take back to the hotel that day.  Extra rechargeable batteries and the battery charger, the remote and remote charger and the device "dehydrator" device.  All to be plugged in that night.  It's not going to be as simple as taking it off every night anymore, I have to plug all of this stuff in every night.  I hope Dave can build me a special piece of furniture to set near my bed to put all of this.

Dave and I grabbed a shuttle from the Mayo Clinic to St. Mary's hospital and walked to the Canadian Honker for dinner.  We usually hit the finer restaurants but decided to give this restaurant which was a local favorite a try.  I had a Lady Godiva Martini to celebrate my first day of hearing.  I can't gauge how loud of a place it is, but I couldn't decipher any sounds.  Dave described that it was a very talkative environment with a little music in the background.  All I could hear was a constant pinging of tones.  It was much harder to communicate with Dave.  I would find out later that my brain was working double time trying to decipher the sound at the same time I was trying to lip read.  The hearing is trying to catch up with the lip reading.  Sounds confusing, it's frustrating to say the least.

After dinner, we discovered that the next shuttle was an hour and a half away, so we decided to walk back to our hotel.  The hotel was less than a mile from the restaurant.  It was a nice way to work off some dinner calories as I was stuffed.  I was hearing things and Dave would ask me if I could hear certain things.  We were walking on a sidewalk along a busy street and I could hear the hum of the cars going by and the thumping of the tires over those fixed cracks in the road.  I was also hearing the clanging chimes at the traffic lights, this was a new sound.  Before I would only hearing clicking, this time it sounded like a clanging chime.  

The next morning, I had a follow up visit with my surgeon and he asked how things were going.  I told him that it was very confusing, but I know that I have to relearn how to hear everything.  I said "I have my ear on the prize."  That's right, he said.  It's going to take some time.  He looked over the incision and seemed to be pleased with how well it was healing.  We joked about the "haircut" he gave me during surgery, I had a "punk" look going for me.  He chuckled.  I am always looking on the bright side of things, the shaved spot and how I would look never really bothered me.

After that visit, I had my first adjustment with the audiologist.  Again, we went through a series of tones and I would count how many times I hear them.  My device was "ramped" up to permit more volume and more tones, especially those higher pitch sounds. At first, I told the audiologist that it seemed too loud and that it sounded more "bassie" than I had expected.  She made some adjustments and I thought it sounded a little better.  It is still dramatically different.  I would be practicing with this level.  Voices sounded a little more like voices than yesterday.  That day, there wasn't as many random tones firing at me.

This time, she gave me a suitcase full of devices and accessories.  It's about the size of a large laptop bag. There were a lot of parts in that bag and she went through each item with me.  Cleaning equipment, spare parts, special purposes cords, devices and an extra cochlear device in case anything happens to the one I wear.  She gave me instructions to bring the extra cochlear device and some other accessories the next time I come in for an adjustment.

Everything sounds completely different than it did before. There is a lot of noise going on and it's very confusing.  I have to relearn how everything sounds and it takes time.  In the beginning I could tell that there was music on when I heard what sounded like multiple tones chiming at once, it was completely unrecognizable.

And there it is.  I was ready to go out and hear everything.

A side note, I was thinking of my niece Ashley who was graduating from high school that day.  My daughter Jamie was texting and sending pictures to me on my phone.  I would have liked to have been there for her but this caused a schedule conflict.  Jamie had flown out to North Carolina to attend the graduation ceremony along with my parents.  I'm glad she could represent.  

Here is a diagram of the entire cochlear device. 

Sunday, June 26, 2011

The Silence

It would be 2 weeks and 5 days of silence from the day of surgery to the day of activation.  At first, I thought GREAT - peace and quiet for a change.  It's late spring and maybe I can enjoy some time outside.  But I would find that peace and quiet would turn into isolation and the weather turned out to be pretty cold and wet.  Not that I found myself depressed, I just had to work harder at keeping my spirits up.  It helped that I knew there were a lot of people rooting for me.  I can't wait for this to get better so that I can be more involved with everyone.

The first few days were spent recovering from the surgery.  I was groggy and nauseous for several days.  I found myself sleeping a lot.  I wasn't in severe pain so I didn't need any strong pain killers, but it did hurt a little and occasionally I would get a sharp jab of pain, so I took some Tylenol or Advil to keep the pain at bay.  At first, I just needed it 2 or 3 times a day, after 3 or 4 days I only needed it at night.  After a week, I didn't need anything anymore.

My mother stopped by with some delicious wild rice soup the day after I got home.  I love hanging out with my mom, so it was a nice visit.  We chatted and visited for a little while and she happened to be here when I received a beautiful flower delivery from my sister Heidi.  She will be going through her own cochlear implant journey next month.  The lilacs were in full bloom at this time, so Dave cut off a large branch and brought them in.  I sure love the smell of lilacs, it's a shame that they only bloom for such a short time.   Our lilacs are very fragrant, so they smelled wonderful!

Dave would help me with the surgery incision, we had to keep it clean and sterile.  I didn't have the energy or focus to do much of anything during those days.  I would try to read but I couldn't stick with it, the same happened to my hardanger embroidery.  I found that I could work on my crocheting project though.  I had started one several months ago, but had to put it away because there was so many other things going on.  It was nice to be able to pick it up and continue with it.  I actually accomplished a lot in those few weeks.

I wasn't on any special diet, but I found that I had no appetite for anything with strong flavors.  I stuck with oatmeal, toast with jelly, chicken noodle soup, pudding and stuff like that.  TV was the only thing I could find myself doing which surprised me because I originally thought that it wouldn't appeal to me without sound.  With close captioning, it was easy to be engaged with the show and it didn't require any serious effort to follow, just passively watch a story unfold within a short period of time.  For some reason, I found myself watching Food Network TV.  I'm a foodie without an appetite for food.  Strange isn't it?

Dave went back to work the following week, so I was home alone most of the time.  I kept myself busy working on my needlework, reading and writing.  Friends and family reached out and wrote to me.  A few stopped by.  I enjoyed getting cards & notes and staying in touch with people through facebook or email.  My cousin Ronda's kids, Emma and Tommy sent some cute notes to me that I hung on the refrigerator.  It makes me smile every time I look at them.  My cousin Rana kept in touch with me and offered to pick things up for me or take me places.  That was real sweet.

The quiet can be very isolating.  It doesn't matter whether I am alone or among others.  I'm just more painfully aware of how isolated I am when there are others around me.  I could lip read really, really well to those who were talking to me.  But I couldn't follow along with other conversations at all, especially when they get lively.  This is temporary and I know that down the road, I will be a bigger participant in things.

When I finally had an appetite to eat some decent food, I told Dave that I was in the mood for Famous Dave's and he went and picked up some take out.  I think the craving hit when I noticed that Famous Dave was competing on a Food Network show.  My husband likes to pick up a platter which gives us enough food for several days of leftovers.  I LOVE Famous Dave's baked beans, so we usually get an extra container.  That was delicious!  Calories don't count during recovery.  I had also hinted that I was craving some amaretto fudge and Dave stayed up late one night making a batch for me as a surprise.  That was a treat I treasured for some time.

We went to my folk's place to celebrate my brother Andy's birthday.  I think that was the first time I left the house since we came home from the Mayo.  I love being with my family.  I didn't mind that I couldn't hear anything, there's just something comforting being with those you love.  That night my mom and I agreed to "meet" on facebook and chat at a specified time.  This worked out pretty good, I looked forward to that time.

After awhile, I began to think that I didn't care what the new sounds sounded like as long as I could hear something!  Maybe that's the point! I am so ready for the activation.

Thursday, June 23, 2011

The Surgery

Surgery was scheduled for May 25th.  I had pre-surgery appointments with the endocrinology group and the cochlear implant team on the 24th.  Dave and I stayed at the International Hotel in Rochester this time.  Interestingly enough, so was the President of Iraq and some Kuwait diplomats so there was Secret Service all over the hotel.  This hotel was one of the luxury hotels in Rochester, our place was really nice and it was right across the street from the building most of my clinic appointments were in.  It had two rooms, a sitting area and the bedroom and two bathrooms.  A nice bouquet of bright flowers were set on a coffee table and a bowl of fresh fruit rested on a sitting table.  Very comfortable and elegantly decorated.

In the weeks leading up to surgery, I had been busy getting things caught up at work and training people to cover my tasks while I was on disability.  My former boss and current manager both encouraged me to take advantage of the disability program, that's what it's there for.  I've been working pretty much since I left high school with a one year break when Jamie was born, so it's nice to be able to take advantage of the disability program and focus on the healing and adaptation.

Oddly enough, I wasn't really nervous about the surgery.  I mean, I knew that the surgery was going to be done on my head and it is major surgery, but I was more excited about the possibilities than I was nervous about the upcoming surgery.  Let's just get that part over and done with I thought.  I completely trusted that my surgeon and his team knew what they were doing, they've done hundreds of these.

On the day before surgery, I was up early for a blood test at 7am.  We checked in with Endocrinology, the fun doctor I had before wasn't there this time but another gentleman checked me.  My thyroid has been shrinking, I could notice the difference and he could too.  He compared my neck to the pictures that were taken a couple of months ago and estimated that it shrank about 20%.  That's GREAT!  At this rate, it will be down to almost normal by the end of this year.  I am just so happy that something is happening and in a good way.  I hope that this keeps up.  He said that there shouldn't be any problem with the surgery so I was good to go.

We had a visit with a different Audiologist who was going to be working with me on my Cochlear Device.  It was more of an informational meeting, she described what was going to happen in surgery as far as the device was concerned and she offered to answer any further questions or concerns we had.  This time I was more interested in what kind of things I can expect to hear.  I was trying to clarify exactly what I will be able to hear.  It's not something that can really be quantified though.  Each individual is different. It's all about your ability to listen and perceive.  The potential is there and I'd like to think that an extremely observant person like myself will be able to maximize that potential.  Time will tell.

From the audiology department we walked to the surgeon's office on the same floor.  He also explained what was going to happy at surgery and mentioned that he has a staff of doctors that work with him but he's the one who will actually put the device in.   I mentioned to him that I wasn't really nervous about the surgery, I am already looking ahead.  The "activation" was scheduled for June 13th.  That is the day I am looking forward to.  With no further questions or concerns, we left the surgeon's office and headed to the Pre-surgery appointment.  I was weighed, measured and questioned.  In the end, I was good to go.  No problem, I am calm and ready.

Surgeries scheduled through the Mayo Clinic work a little differently than usual.  The date may be scheduled, but the time slot isn't determined until the night before surgery.  Each day, doctors enter their surgery requests at St. Mary's into the system before a certain time, then St. Mary's schedules all of the surgeries for the following day.  Everyone is supposed to call a hotline number after 8:30 at night to find out when they need to report to the hospital for their surgery.  I think this is a brilliant system but it makes it harder to have visitors when they don't know what time you're going to be in the hospital.

That night, Dave & I went to dinner at a nice restaurant and I had one cocktail with my meal.  (What else but a Cosmo!)  We had to keep an eye on the clock though.  We needed to call that surgery hotline number after 8:30pm.  I couldn't eat anything after midnight, but I could have clear liquids up until 2 hours before surgery.

Later that evening, we called the surgery hotline and found out that I was to report to the hospital at 10:00 am.  I called my parents right away to let them know as they planned on coming down to be with me.  Even now, I wasn't nervous or scared.  I'm not sure why I was so calm.  That night, I slept well.

The next morning, we woke up early, showered, dressed and headed over to the hospital.  We grabbed a shuttle bus from the Gonda Building at the Mayo Clinic to St. Mary's hospital.  We arrived pretty early, but we hadn't expected the ride to be so quick.  No matter, I was brought to my pre-op room, changed into the hospital attire and settled in for the morning.  There was one surgery before me, so I did have to wait  my turn.  My parents found me and waited along with me and Dave.  We chatted the morning  hours away.  My room had large old fashioned double hung windows that overlooked a pretty manicured lawn.  They had that old glass that is slightly warped in them, but we could still see outside.  It was raining that day, so there wasn't much activity outside other than the cars on the busy street.

10:00 came and went.  Several hours went by.  Eventually a nurse came by and mentioned that the surgery before me was scheduled for 7 am, but it was delayed by several hours so my surgery would be delayed too.  Not only was the surgery before me delayed, it looked like some complications came up.  I think it was about 3 in the afternoon when they finally came and collected me.  I am so grateful that my parents were there along with Dave & I, it sure helped to pass the hours.

Seeing that nurse come in with the gurney to lead me away to surgery made me happy.  With a smile on my face I asked "It's time?" and she confirmed that it was.  I think she was surprised to see me so ready to go.  I hugged Dave and my parents, then I laid myself down on the gurney.  I was wheeled out of the room, Dave and my parents followed me out.  My husband gave me a quick squeeze to my hand and then I was gone.  I was smiling and I never looked back, I am so ready for this.  I am not afraid of what's ahead, this is it, the beginning.

I was wheeled into a pre-op prep room.  I was hooked up to monitors and IVs.  I received a couple of visits from some very nice nurses.  The first gal was a real sweet heart.  Sometimes beautiful conversations come in the most unique situations.  I don't know how we got to the topic, but we spoke about kindness and validation.  The best gift anyone can give another human being is validation.  She asked if I needed anything and I said I didn't, I mentioned to her that I'm not really a fussy person and find it easy to be content.  She said she could tell.  We also got on the topic of disabilities.  I mentioned to her that a former boss once told me that he didn't see me as disabled, he saw me as differently abled.  As for being differently abled, God had to keep me humble some how and she thought that was adorable.

She had to leave and another nurse came by for a little bit. Later, my doctor's assistant surgeon came by and marked the ear that the surgery would be done on.  He also asked me if I had any questions or concerns.  I really didn't.  I'm sure that they must get a lot of patients that get nervous or scared.  The anesthesiologist came by and asked me some questions.  Mostly whether I had known allergies and if I ever had surgery before.  I did have my appendix removed over 20 years ago and didn't have any problems.  Within minutes, I was moved into the operating room.

I saw my surgeon in his garb waiting outside the operating room in the hallway and I smiled and said Hello to him.  I was all smiles as I got into that room.  I was introduced to everybody, moved onto the operating table, asked if I had any questions and to confirm what I was having done.  "I am having a cochlear implant in my left ear."  And then everything moved so fast, I was asleep in a matter of seconds.  I think it was around 4pm.

Hours later, I felt a nudge on my arm and I woke up.  I was super groggy, and I looked up.  I happened to see a clock and I saw that the time was 8:30pm.  I tried to force myself to stay awake, but I kept slipping back to sleep.  I was sitting up, but it was extremely uncomfortable.  I couldn't stay awake, I was extremely uncomfortable and I had some pain in my head.  At about 10, I was able to stay somewhat awake and the nurses told me that I would be spending the night in the hospital as there were no doctors available to release me until the morning.  This was actually a blessing.

There was a very large bandage tightly wrapped around my head and I don't hear a single sound.  I was groggy, a little bit nauseous and uncomfortable.  They wheeled me into the room that I would be staying in for the night and I moved onto the bed, I asked if I could lay on my side as it hurt to sit on my butt.  Dave was there waiting for me, my parents had gone home after they talked to the surgeons after I got out of surgery.  I desperately tried to sleep it off, but the pain was kind of too much and I mentioned this.  I was given some Oxycodone and Tylenol.  I got a little loopy I guess, but no longer uncomfortable or in pain.  For some reason, I got restless and I wanted to get up.  I kind of begged to be let up, eventually I asked if I could go to the bathroom.  Not that I needed to go, I just wanted to stand up.  After getting up and using the restroom, they made me go for a walk down the hallway.  My husband said I was goofy and loopy, but I don't remember this of course.  He said I was practically off and running and the nurses had to quick catch my IV up with me so that I could hold onto it.

Sometime around midnight, Dave left to go back to the hotel and I tried to sleep.  Earlier they had offered me a sleeping pill and I turned it down.  In retrospect, I wish I had taken it.  I hardly slept that night, I kept waking up every 15 - 30 minutes.  I was fighting to sleep and it was impossible.  That was one of the longest nights of my life and morning couldn't come soon enough.  In the early dark hours of the morning, I tried to have a bowl of oatmeal which did not settle very well in my stomach.  It didn't stay there if you know what I mean.

The surgeon's assistant came by in the morning to remove the head wrap.  Everything looked good and I was cleared to go home.  I ordered a breakfast which came shortly after.  A nice hot plate with a cheese and egg omelet, bacon, toast and orange juice.  I don't remember if there was anything else on my plate but it was unusually bland for me, but I just didn't have an appetite for anything with strong flavors.  Dave came by while I was eating my breakfast and I told him that I was cleared to go, we are just waiting for the hospital to fill my prescriptions.  I was given a bottle of Oxycodone and 5 days worth of antibiotics.  We were given a lot of instructions what we needed to do for the surgical incision and my general well being, I managed it all with lip reading alone.

From my room, we walked to the pharmacy to pick up my prescriptions, then we went to the car in the hospital garage.  Dave had to quick check us out of the hotel and then we drove home.  I was tired and still a bit groggy.  I leaned my head back on the headrest and wished that I had thought to bring a pillow.  But we made it home in good time and I slept.

The worst of it was over.

Tuesday, June 21, 2011

Testing At the Mayo Clinic

Last fall, I had mentioned to a couple of people close to me that I was thinking of doing the Cochlear Implant Surgery.  I didn't want to announce that I was thinking about it as I wasn't sure how I felt about it and I didn't want to defend something I wasn't sure about.  There were just so many questions going through my head.  There came a point though, when I realized how much my inability to hear was impacting my life and something needed to change.  About this time, my sister announced that she was going to do a cochlear implant.  Neither of us were aware that the other person was seriously considering it.  I confided to my husband that I wanted to pursue this and he helped me research where to go from there.   As far as I know, Cochlear Implants are only done in two places in Minnesota - the Mayo Clinic and the University of Minnesota Hospital.  We did our research on the web and decided that we were more comfortable going to the Mayo Clinic.  The Mayo Clinic was farther away but it's a nice drive through country.  I am sure that the University is a good place and their cochlear implant recipients get good results too but I am pleased with my choice.

We contacted the Mayo Clinic and they asked for a copy of the last audiology exam.  I called up my former audiologist and asked them to fax the results of my last hearing test.  I followed up with the Mayo to inquire if they had received the fax and they confirmed that they did, they also asked to do a short interview over the phone.  I mentioned that I was pretty sure that my hearing was worst than that last test and that my deafness was caused by Pendred's Syndrome.  I was pretty nervous, would they accept me as a candidate?  Was I doing the right thing? They informed me that a team would be reviewing my case and they would get back to me.  I hadn't heard anything after a week and I was pretty anxious so I called them back up.  The department secretary stated that they had just reviewed my case that morning and determined that I was a qualified candidate and they would like me to come in for further testing.  I was thrilled to move forward.  My family was already on board and I mentioned it to a few more friends and the response I got was overwhelmingly positive.  I started thinking in terms of how much my life would improve and began noticing the way I hear things.  Will this change?  Will it be better?  I was sure that some sounds had deteriorated into nothing and I hadn't noticed because the change was so gradual.  I hadn't heard the wind in the trees for years, it used to be one of my favorite sounds.  I loved that sound of the papery leaves rustling in the wind.  The pines had their own sound compared to the maples and aspens.  Will I get this pleasure back?  Will I recognize it?

My very first appointment was Monday, March 14th at 9am with one of the audiologists.  Dave & I decided to drive down to Rochester on Sunday and stay overnight Sunday and Monday night.  My husband is not a morning person, so it was easier for both of us to go down on Sunday and not worry about rushing early Monday morning.  We stayed at the DoubleTree Hotel which was within the skyway and subway system that was connected to the Clinic. I guess the signature service for the DoubleTree is giving their guests chocolate chip cookies upon arrival.  Those cookies are GOOD!  They tasted like something you would buy from a gourmet bakery.  I was very excited to be there, I couldn't wait to get the process going.  We could see the Mayo Clinic from our Hotel room at night, my journey is about to begin.  I don't think I could sleep much that night.

The first tests involved several intensive hearing tests to determine the severity of my hearing loss.  I was tested without my hearing aid and with.  I knew my hearing had deteriorated but I didn't realize how bad it was.  One of the tests is where I would repeat one syllable words by sound only, I think I used to get half of them right.  This time I didn't get even one word right.  No wonder I was struggling so hard.  I did a little better with multiple syllable words and sentences, but not much.  It was kind of a sobering experience.  I'm glad my husband witnessed it because I don't think he ever understood how bad my hearing had gotten.  Both my right ear and my left ear were tested.  My hearing loss is significantly different between the two ears, but I've always only worn one hearing aid in the good ear.  I wasn't surprised to learn that there was no usable hearing in the bad ear.  The audiologist told me that I passed the criteria for cochlear implant based on the results of my hearing test, that is to say that I "flunked" all of my hearing tests.

One of the things that stuck with me is that she told me that cochlear implant surgery would improve my ability to hear normal conversation and I won't be so exhausted from trying so hard to communicate with people via lip reading.  I would have more energy and I should not need to rely on lip reading as much.  I know most people take their hearing for granted, but I cannot imagine what a luxury this would be.  And to be able to hear much more than I do now?  At this point, I started realizing how much I was missing and how much I had to gain.  I have nothing to lose.

Until she mentioned that, I thought I was depressed, out of shape and generally a mess.  I wanted to work out, but I just didn't have the energy to do anything after work.  I couldn't even get out of the house to go for a walk which isn't that taxing.  To be honest, I was a vegetable, I would watch the clock for bed time.  I didn't feel like hanging out with people much or going out on the weekends.  I would never skip a commitment but I avoided making them in the first place.  I was always exhausted and now I know why.  I had no idea that my struggle to communicate and listen to others was taxing my energy that much but it makes perfect sense.  Lip reading takes extreme focus.  To give you some idea, have you ever taken a difficult class that required your utmost attention in order to follow it?  Did you ever notice how tired you were afterwords?  This was me on a daily basis.

That afternoon, we went through a Patient and Health Education Consultation to learn about the Cochlear Implant process.  Dave & I had already done some research and I relied on my husband's technical expertise to help me pick the device I would use.  The learning session wound up being kind of fun because there were two doctors from the Navy based out of San Diego that were observing the session.  With my permission, they observed how the Mayo Clinic does an education session for cochlear implant candidates.  Quite honestly, it was a very simple presentation and I already knew most of it based on my internet research.  After the presentation, the instructor brought out the two Cochlear devices that are currently available on the market and Dave & I along with the two doctors looked at them and tried them on.  Everyone had an opinion, but of course mine was the one that mattered.  

After the Education Consultation, we met with the audiologist again.  She also showed us the two devices and gave us some specific pros and cons. She said that bottom line, they are both excellent products and neither of them are really better than the other.   It's all about electrical pulses and how your brain interprets them.  She gave me informational packets for the two cochlear devices to take home and look over.  The next step was to visit with the surgeon and see if my ear physically qualified.

The next day, we met with the surgeon.  He was a very kind man, very smart and very patient.  He went over my hearing tests and everything that had been done up to that point.  He said that I most definitely qualified for cochlear implant surgery, but he felt that I would get the most benefit from having the cochlear implant put into my good ear.  He felt that putting it into the other ear would give me the same benefit that my current hearing aid gave me and that wasn't enough for me.  We had dozens of questions for him, especially Dave.  Dave does electrical engineering in his job, so he really could relate to the technical aspects of the process and he surely challenged the surgeon with his questions.  The assisting nurse at one point asked him if he was an engineer and I told her that he was.  She said that she figured he was because Engineers always ask a lot of questions, especially technical ones.  We all laughed.  But I am lucky that my husband is such a talented engineer, I trusted him completely to make sense out of all this and to help me pick the best device for me.

After presenting the potential risks involved, the surgeon asked if I wished to move forward.  I told him most definitely.  "I need it to be better than this in order to be able to enjoy the rest of my life," I told him.  This was a big moment for me, everything is moving forward.  We are all on board now.

I was scheduled for an MRI that afternoon to get an accurate picture of my ear.  The amazing thing is, the Mayo Clinic operates so well that I was able to get in for an MRI less than one hour later.  Later that same day, I received a vaccine shot to prevent pneumonia and meningitis.  Because the surgery is done around the skull, there is a greater risk for meningitis so they gave me a vaccine to prevent it.  

One thing that held me up though was my enlarged thyroid.  The surgeon did notice this and had some concerns.   He didn't want to proceed with the surgery unless someone looked at it and cleared me for surgery, so they scheduled an appointment with an Endocrinologist. This is another fantastic aspect of the Mayo, they do all of the scheduling for you and work with you.  I was lucky, when the nurse called over to that department to make my appointment, someone had just cancelled their appointment that Friday so there was an opening for me.  Dave and I went home and came back to Rochester Thursday night because we had a 7:00 appointment Friday morning.

Until this point, I wasn't seeing anyone for my thyroid because it was usually fruitless.  All my life, the hormone tests would come back normal baffling doctors because my thyroid was obviously large.  Most didn't want to do anything because they were afraid that the hormone levels would get messed up.  At the time that it was discovered that I had Pendred's Syndrome, the ENT Specialist suggested that I go to see someone for my thyroid and to find somebody who was familiar with it.  I had checked around and set an appointment with whom I thought was one of the best in my area and I had to wait months to get in.  I thought that the best should surely know what Pendred's Syndrome is and know what to do.  She couldn't help me, she didn't even know what Pendred's Syndrome was and was baffled why the hormone levels were normal even though my thyroid was quite large.  She suggested surgical removal if it caused me any problems with breathing or swallowing but otherwise did nothing.  I had done a lot of research on Pendred's Syndrome at that time and I mentioned it to her, she wanted me to share MY research findings with her.  I never went back, I didn't think there was any point.  

That Friday would prove to be an enlightening and fun day for me.  We were taken in by an intake specialist who looked at my thyroid and blood tests results.  She asked me several questions and asked if I was experiencing certain symptoms.  I did tell her that I was exhausted but felt that it had more to do with my hearing problems than it had to do with my thyroid.  I also made it a point to tell her that I had Pendred's Syndrome.  After the interview, she mentioned that she wanted to have another doctor take a look at me because she was not familiar with Pendred's Syndrome.  She warned me that it might take awhile because she is going to try and catch him between patients.

She came back about a half hour later and told me that he was on his way and said "I have to tell you, when I mentioned to him that you had Pendred's Syndrome, his eyes lit up and he smiled."  She said she could tell that he was very excited.  He grabbed a couple of fellowship doctors and brought them in.  He asked for my permission for them to observe, which I gave.  He felt my thyroid and the others felt it too.  He explained that I had an iodine deficient thyroid, it actually works beautifully as far as the hormones were concerned but my body lacks the ability to make a certain organic compound that attaches itself to iodine in order for it to metabolize correctly in the body, so the thyroid is working overtime to try and make this compound.  He prescribed a full doze of a synthetic hormone.  The point of this is to do the work in place of the thyroid, thereby shutting it down causing the thyroid to shrink.

He was so much fun.  I felt like a celebrity.  He really was interested and I was just so thrilled that somebody knew what I had and knew how to treat it.  The Mayo Clinic truly is the best place for me. He had been a doctor for over 25 years and had only seen Pendred's Syndrome twice before, that gives you an idea how rare it is right?   He wanted to document my progress for research purposes, so we scheduled an ultrasound and a photography session later that day.

The doctor thanked me for being such a fun and interesting case.  "Mind you," he said, "being a fun and interesting case isn't always a good thing but in your case it's not a bad thing."  I laughed, I thought that was pretty funny.  Just as he was leaving the office, he turned and asked me if I would mind if he could bring in more doctors to take a look at me.  I told him for the betterment of medicine go ahead!  I want more doctors to be familiar with this condition so that maybe someone else wouldn't have to wait over 25 years to run across a doctor that knew about this condition and how to treat it.

He brought in a group of about 6 or 7 younger doctors.  Before they came in, he told me that he would like them to try and diagnose my condition.  I can only answer yes or no questions and I can describe my symptoms but I cannot tell them what it is.  Someone did come up with it but couldn't remember how it was pronounced.  He told them that he wanted them to see this case because there is a good chance that they may never run across it again.  But if they do, hopefully they will remember this visit.  In the end, he said I was cleared for surgery and wished me luck.  He did request that I see them the day before my surgery so that they can check my thyroid to make sure things are going as expected.

After our fun visit with the Endocrinology Department, we hooked back up with the Audiologist and the Surgeon.  We ordered my cochlear device and accessories and scheduled the date of surgery.  I had only one request, I didn't want my deaf or adjustment period to fall on my daughter's college graduation which fell on May 7th.  The surgeon had a event to attend in South America shortly after that, so the big day was scheduled for May 25th.  We are go for surgery!

Thursday, June 16, 2011

The Beginning

On May 25th, I had cochlear implant surgery to implant the internal part of the cochlear device.  This blog is about my journey before and after the Cochlear Implant Surgery.  The best place to start is usually at the beginning right?

I was born hearing impaired. This was not known to my parents or doctors at that time.  There was no reason to suspect it because deafness did not run in their families as far as they knew.  A couple of years later, my sister was born who was also hearing impaired.  Again, no one suspected anything.  My parents began to suspect something was wrong when I didn't talk or respond to normal things like answering when they called out to me.  My mother said that she knew something was definitely wrong when she saw me in the street when a car had come up behind me and honked it's horn at me but I did not respond or react to it.  (I have no idea why I was in the street, but we lived on a nice, quiet street in the suburbs).  They took me to several doctors and the doctors kept telling them that nothing was wrong.  One doctor went so far to say that I was being a very stubborn child.  They would slam doors and see if I responded.  I did of course, I wasn't completely deaf.  After begging several doctors, they finally got a referral to take me to the University of Minnesota Hospital for testing.  Back then, you could not get to the University without a referral, which most doctors refused.  When one doctor finally relented and gave the referral, my mother said they knew at the University right away that I was hearing impaired.  It took about four years to get diagnosed correctly.  My mother said that I had this look of surprise when I heard my first sounds.  Though I don't remember it, I'm sure it was a lot to sort through for me.

These days, largely due to my parent's pioneering efforts, doctors developed a test to be used on newborn babies to check for hearing loss.  I think I read somewhere that 1 in 10 babies are born with some degree of hearing loss.  The scary thing is, that before they got wise to hearing impairment, some children were deemed mentally disabled.  I met such a person in my late teen years, and it makes me angry to this day when I think of a wasted life.

Due to the fact that I hadn't been hearing or speaking for long, I went to Kindergarten more than once.  Once to start learning to communicate and next to really start school.  I went to a mainstream school that had special programs for the deaf and hearing impaired.  I went through years and years of speech therapy at the schools.  It was tedious and boring work and I usually despised it.  I especially hated it as I got older and into middle school.  To my recollection, I was the only hearing impaired student in my grade at the middle school and I hated that I had to go to speech therapy instead of a regular class. There were several hundred kids in my grade alone.  Thankfully, they eventually stopped making me go.  I'll be honest though, as much as I hated all those years of speech therapy, they got me to where I am today.  Most people do not notice that my speech is slightly different and if they do, they think I have an accent.

Right now, I will pretty much skip over my middle school and high school years. Maybe I'll write about it some other time, but for now let's skip over this.  All teens in these years struggle with peer pressure and self identity.  It is worst if there is anything different about you and you don't have somebody solid in your corner.  If you're a teen or young person who is struggling and you're reading this, let me tell you - IT DOES GET BETTER.  Just hang on and get through it.  My life is such an adventure now, there are ups and downs but boy I sure do enjoy the peaks.

I was lucky in one respect - I had a great family.  My mother grew up with 9 siblings and my dad grew up with 13 siblings.  They came from loving families who never once made me feel like I was different.  I am sure that they always knew that they needed to speak as clearly as possible so that my sister and I could understand them.  My good childhood memories can be traced back to the times we spent with the families.  We also lived in a close-knit neighborhood who did things together.  We went to church together, we went on camping trips together, had many neighborhood picnics and parties.  My sister and I had pretty much normal lives other than the fact that we couldn't hear.  We also had two younger brothers who were born with normal hearing.  They also brought joy to our lives too and we remain wonderful friends.

I married a decent and kind man who stayed by me through the thick and thin and I gave birth to a beautiful girl who grew up to be a strong, intelligent and beautiful woman. I absolutely adore them.  My husband and I  enjoy travelling and I feel so fortunate to have been able to travel to the many places we have gone to.  We've been all over the U.S. with our daughter and have started travelling abroad in the last few years.

My hearing did get gradually worst as I got older.  I would go through periods of complete hearing loss.  The first bad one happened weeks before I was to get married.  I was driving my car listening to my Michael Jackson's Thriller tape cranked to the max and then walked into a Target store and my hearing deteriorated to nothing within a matter of minutes.  My mother and I went to my audiologist who checked my hearing and confirmed that it was gone.  Of course I didn't hear the conversation, but I remember him looking at me and asking me if I was doing drugs.  I don't remember how I responded but to this day that question still irritates me when I think about it.  For whatever reason, the need to experiment with drugs never came to me which is why this question still irks me I suppose.

One of my last bad episodes, I went to a different ENT doctor to take a look at it.  He gave me a cortisone shot in my ear, which was supposed to help heal the ear so that I could hear again and it did.  They did a CAT scan to make sure that there was nothing else going on.  The scans came back normal, but out of curiosity, I asked how a CAT scan worked exactly.  The ENT doctor proceeded to explain that a CAT scan takes sliced pictures of your head, then he pulled up one of the scans to show me.  He was starting to point out my ear on the scan, when  he noticed something odd.  He said "hmmmm....", looked at the envelope that the scans were in, then looked back up at the scan and then he turned to face me and said "I know why you're deaf".   He was really excited because he discovered that I had one of the classic symptoms of Pendred's Syndrome in my ear.  Pendred's Syndrome is extremely rare, so I guess to discover it is a pretty unique opportunity.  At that time, he mentioned that I would be a good candidate for Cochlear implant.  This was the first time it ever came up.  At that time though, I thought I was functioning pretty well with my hearing aid and my audiologists agreed.

Since then, I would go through intermittent periods of hearing loss, some more severe than others.  Some lasted hours, some lasted over night and others lasted for days.  Each time they happened, my hearing would come back but never as good as it was before.

In the last couple of years, I wrestled with whether I should get a cochlear implant or not.  The question I had was how much benefit would it give me?  Is my hearing aid failing me or am I doing okay?  The answer became more clear as I realized that I had become more withdrawn and avoided social gatherings including those that I used to enjoy.  I dreaded large gatherings.  I knew that I was missing out a lot and the isolation was almost unbearable.

My next post will be about the medical visits that lead up to the implantation.