the true life experience of a CI recipient

Thoughts of having CI surgery had been on my mind for several years and those thoughts grew stronger and more serious in tandem with the increasing deterioration of my ability to hear in my right ear.  My loss of hearing began years ago due to exposure to loud noise and in recent years went from a moderately-severe loss to a severe loss and final to a total loss in my right ear after an ear infection.  In spite of my now being deaf in my right ear and having a substantial loss in my left ear I was still somewhat wary of having CI surgery because I had occasionally read about failed implants that had left patients with unwanted results.   But I reasoned that in order to get an objective view of this situation it would be necessary to meet people that had had CI surgery and then draw my own conclusions from their experiences.  I found that most of the people that had cochlear implants were satisfied with the results while there were a few who were not.  But I also realized that making contact with people who had successful implants would be less difficult than finding those with opposite experiences and this was due to the fact that those people who have experienced successful implant procedures are organized and have regular meetings where they express their views.  After weighing the pros and cons over several months and often vacillating between the decision to go ahead with the surgery or not take the risks I finally decided to take the first step and began the pre-surgery testing to determine whether or not I was a candidate to have it done.  After many required tests were completed over a period of several months I was informed that I was a candidate for a CI and with my consent the surgery was scheduled for March 15, 2018 to be done at the VA Medical Center in Minneapolis, Minnesota.

On the morning of March 15th I arrived very early as was scheduled, changed into a green gown, and lay down on a mobile bed in a supine position as directed by a nurse.  Then an IV was inserted into my left arm.  The staff surgeon who would perform the surgery soon came by the bed and gave me a warm greeting that helped me relax and lifted my spirit.  A few minutes later a nurse began wheeling the mobile bed down a hallway toward the room where the surgery was to soon take place.  As I was being wheeled past a window with a view to the outside I noticed the morning sky was just beginning to brighten bringing in the new day.  That was the last image in my mind before the anesthesia took effect and my conscious state ceased as I ‘went under’ as the transition from a conscious to an unconscious state is often called.  The next conscious moment that I remember was being wheeled from the surgery room and again I noticed the outside sky through a window but instead of seeing a bright daylight sky as I had expected what I observed was a darkening evening sky.  That was the first indication that something was not right.  It took my groggy mind a few minutes to connect the inconsistencies of what I had just observed as I was well aware that the normal time for CI surgery was about 2 to 4 hours and is usually considered an outpatient procedure.  But if what I had just observed was correct I had been under anesthesia and in surgery for what must have been 12 hours.  Knowing that even major open heart surgery takes no more than 3 to 6 hours I was naturally astonished that my CI surgery may have taken as long as it did.  Although deeply troubled as to the reason or reasons why the surgery had taken so long I still held hope that the CI was a success.  An assistant to the staff surgeon would soon come by my bed and inform me that the surgery had indeed taken 12 hours and that was due to complications of some sort.  Without going into more details the assistant simply stated that the surgery had failed and then left the room.  Little did I know at the time that the news I had just heard was only the beginning of something bigger and the worst was yet to come.  As I tried to absorb this new reality of the failed surgery the let down from the optimism that I had felt pre-surgery left me with empty and depressed feelings.  I would later learn that only a number of electrodes were able to be secured in my cochlea leaving a number of electrodes outside my cochlea and therefore useless.  Also, the staff surgeon would later tell me in a blunt but realistic manner that my CI would never be as good as a successful implant would have been.  Knowing that even a successful implant has entangled webs to work through before it is considered a success didn’t leave me with much hope.  With a tinge of anger swelling in my breast I questioned in my mind why all that pre-surgery testing  hadn’t revealed any indication as to why there might be complications.

Soon after the failed surgery experience I was discharged with thoughts and feelings of disillusionment believing that my present hearing predicament was probably a permanent one and marked the end of my quest to have any hearing restored to my right side.  But then to my surprise a few weeks later I received a notice from the audiology department that an activation of my implant was scheduled to be done on April 5th at the same VA Medical Center.  With a rekindled spirit I could only assume that they thought there still might be some benefits to be gained by activating the electrodes that had been secured in my cochlea and I deeply hoped that those were their thoughts and that their assumptions were correct.  On Thursday, April 5th the activation process proceeded under the direction of a trained technician.  After a few hours of having electronic pulses transmitted to the electrodes in my cochlea I began to hear spoken words as single, short beeps but there was no distinction of words or any semblance of the human voice.  I knew at that time that those kind of beeps were probably a normal part of the activation process because my understanding was that in order to hear with a CI there is an extended learning and adjustment process involved and therefore I was not disappointed.  With the completion of the activation I went home with a renewed but guarded optimism.

In my wildest imagination I could never have predicted what would follow as the day after the activation will long live in my memory.  As I got out of bed in the morning I fell against the wall unable to keep myself upright using my own resources.  My balance system was totally nonexistent and it was a frightening state that I had never experienced before in my life.  In addition to the loss of balance I felt extreme vertigo, dizziness, and a sickening nausea permeated my system.  I stumbled my way to the bathroom by grasping anything within reach that would help me stay upright.  With every step that I took my entire visual world in front of me bounced up and down and swayed in motion in a frightening manner.  I had never in my entire life imagined a physical and mental state existed that I was experiencing.  I was in a different world now and I had never felt as helpless and miserable as I did in the days following the activation.  I spent the first week after the activation in bed for most of the day and all of the night and they seemed like endless days and nights where time had no meaning anymore.  In addition to the physical trauma that I was experiencing was the anxiety of not knowing if what was happening were symptoms of a deeper condition that might develop soon and not knowing if the present miserable state was something I might have to live with for the rest of my life.  It was a constant question in my mind whether or not these disturbances were symptoms of something bigger that might develop soon.  Added to that was the fact that no one, professional or otherwise, could answer any of those questions.  Then after struggling with this trauma for many weeks on end I began to notice a slight improvement in my overall condition with each passing day.  This gave me hope that a full recovery might be possible at some time in the future in spite of the fact that the post activation problems were still with me, but not as serious as before.  I began to seriously  have some faith that a full recovery could eventually happen.  My balance problem seemed especially difficult to deal with as I could not walk following a straight line without feeling myself pulling to the right or left in a staggering manner and it was embarrassing to walk in public because I was conscious of appearing tipsy-like drunk in the eyes of others.  At that point I realized that I would soon need physical therapy to help correct the problem.  But I was also worried about the possibility of my balance problem being permanent to a greater or lesser degree.  With some improvements in my overall condition after all that trauma and tension I began to very cautiously develop a more relaxed and optimistic outlook of the future.

Then one night as I lay sleeping in bed I was suddenly and unexpectedly jolted awake by a very loud motor-like roaring sound with rumbling and grinding in the background.  The first thought that entered my mind was that someone in one of the neighboring apartments had turned on a generator or some other kind of motor device.  In the darkness I placed the palm of my hand against the wall to feel for a vibration.  There was none.  It soon dawned on me that the loud noise was not coming from someplace outside my head but was somehow being generated within the anatomy of my own head.  It also soon dawned on me that there was no way to shut this noise off.  If you can imagine it is like a loud motor roaring right next to a persons ear.  Little did I know at the time that this newly added problem would be just as daunting a challenge as the post activation problems noted above.  This new sound was not the beeps, hums, and other noises that are characteristic of the tinnitus that I know so well and have lived with for many years.  I had never before experienced anything like this loud roaring and rumbling sound coming from within the confines of my own body and it seemed to come from a different source than the anatomy of my hearing structure.  I could and can at this writing feel the effects of the roar reverberate through my entire body right down to the nerves in the soles of my feet with the nerves of my body having an electrified feel.  It was(and is) a terrible feeling that seems to effect every aspect of my being.  Even my taste buds are effected with only a dull, bland taste being experienced with even the spiciest of foods and my eyes being super sensitive to the normal brightness of lighting.  This roaring sound often goes on for two or three days straight without any letup with the resulting physical exhaustion as well as having to have deal with the mental disturbances of the troublesome noise.  Then after two or three days the noise will stop for a day or two and then without warning will start up again anytime during the day or night and so it goes on and on without any definite predictable pattern of occurrence.  Sometimes the noise will start as a low rumbling sound and then build up to its full loudness while other times it will start suddenly in its full loudness as if someone had flicked a switch on.  The roaring seems to have taken on a life of its own.  The intended results of the strongest over-the-counter sleeping pills did not even begin to have any effect.  After days and nights without sleep I was finally able to obtain a prescription for sleeping pills from an M.D. and that helped.

Then after struggling with this new noise for days on end another new noise developed but unlike the roaring sound it came from somewhere in the anatomy of my right ear where I had had the CI.  Also unlike the roaring this new sound was high pitched and went from a low volume to a very high volume as it ascended to a peak and then decreased in volume as it descended back to a low volume and it goes on and on for hours on end as unpredictable as the roaring with both noises sometimes occurring at the same time.  Visually this new noise would be like watching a roller coaster go up and down again and again.  Not knowing the cause of this high pitched sound was another concern since no one could say for certain what the cause might be and a part of that concern was not knowing if this also was something permanent or what might develop in the future.  With these two unwanted noises on top of all the other problems that I was dealing with since March 15th I realized that the CI surgery was indeed a failure and would not hold any advantages for me now or at any time in the future.  Also with these problems going on for months on end with no known solutions in sight my quality of life was suffering which was beginning to affect my will to continue.  Thoughts of suicide would occasionally creep into my mind as I worked through the moral and psychological impediments to such an act.  But I eventually reasoned that there was no medical proof of permanence given for the symptoms that I was experiencing and therefore I imagined life as it was before March 15th being a possibility sometime in the future.  I also knew that to sit and wait for a change in my condition would be doing nothing about the problem when it might be possible to somehow affect a change by being proactive.   Seeking the advice of the staff surgeon I was told that an exact cause of the unwanted sounds could not be determined but the doctor thought that it was probably due to the anxiety of what I had recently been through.  I had thought of that as a possibility before and it was a relief to think that it might not be something more serious and possibly more permanent.   However, after thinking this over I realized that no tests had been done to determine the cause of the roaring sound, which was the most disturbing of the two noises, and therefore to be realistic I had to consider the doctor’s opinion to be just an opinion and therefore only an unproven possibility that was not based on any medically determined facts. I also had to consider the fact that not all doctors are always knowledgeable in every way that can be helpful to a patient.  As you can possibly understand I was ready to grasp onto any kind of information that might hold a ray of hope and I framed my mind to work on the assumption that the noises were anxiety related.  I carried a  guarded optimism within myself that anxiety was the cause and reasoned that if the noises were indeed anxiety related then to reduce the anxiety would in turn reduce the noises.  That left open a whole new area of possibilities of being able to reduce the troubling noises.

I am going to veer off the main path for a moment to note a related and important problem.  During a recent exam at a local hospital one of the nurses asked me the location where I had had my CI surgery so she could enter that information into the hospital records of my personal medical history.  I told the nurse the location where I had had the CI surgery and she then left the room with that information.  A short time later she returned and told me that she had contacted the VA Medical Center in Minneapolis and they have no record of my having a CI at that location. Without knowing any details of the cause as to why there is no record of my having surgery at the VA in Minneapolis(if that is the case) I have to say that this situation presents a problem.  The problem being if a person or persons with professional medical experience would decide to enquire as to the details regarding the reasons for the failed surgery and would contact the VA in Minneapolis only to be told that there is no record of my having surgery at their location it would make me appear as being untruthful in what I have written above.  I will simply state that everything I noted above did happen without any exaggeration.  In order to dispel with any myths about my not having surgery at the VA Medical Center in Minneapolis I post my release papers that were given to me at the date that I was released from the hospital:

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It is now going on five months since the surgery and activation with a full recovery from the effects still not in sight but with signs of improvement in some areas, it seems.  My daily sessions of physical therapy will hopefully bring my balance back to what it was but at this writing I still noticeably pull to the right and left as I walk.   I hope and pray it isn’t permanent.  Those troublesome noises still persist in their agitation and it is difficult to determine their degree of persistence and severity as compared to my prior experience with them because the nature of the noises are so erratic and unpredictable.  Just when it seems there might be signs of positive changes the noise comes back roaring with a vengeance.  In spite of that I am still clinging toward an optimistic mindset hoping that the problems will eventually go away.  But I believe that it is being realistic to question whether or not the noises are anxiety related as was suggested by the staff surgeon. For the most part I have learned to carry a ‘wait and see’ approach to the problems while forcing patience on myself because there is no other alternative.   These aren’t problems that a person can walk away from or put off for another time as are many of our day-to-day problems.  These problems are present day and night where-ever I happen to be.

As everyone knows a second opinion in matters of important medical issues is both sought and welcomed by a concerned patient.  Therefore I will note that two post-surgery CT-scans were performed on my person at St. Elizabeth Hospital in Appleton, Wisconsin.  If any experienced person or persons would like to view them I am sure that they are available for viewing.  Any advice or referrals will be appreciated and you can contact me using the drop down menu above.

Lastly and as one of the main reasons for posting my CI experience is to give my advice to would be future CI recipients:   Approach your upcoming surgery with an optimistic mindset since most CI surgeries are successful, I believe.  But also keep a realistic thought somewhere in the back corner of your mind that there are failures that can have very challenging results and can possible even be life changing.  I hope no one has to experience what I went through since March 15, 2018