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!

No comments:

Post a Comment