shortened version

After having recently lost the last of my hearing in my right ear I decided to have a cochlear implant(CI). The surgery was performed at the VA Medical Center in Minneapolis, Mn on March 15. 2018. After an unusually long 12 hours in the operating room I was told that the surgery had failed. Nevertheless an attempt was made a few days later to activate the electrodes that had been able to be secured in the cochlea. So began a descent into a horrible, life changing experience that can never be forgotten.

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 was a high pitched whining sound that 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.  My reasoning was that if the noises were caused by anxiety then to reduce the anxiety would in turn reduce the noise.

Update: July, 2019

It has now been more than one year since the March 15th, 2018 surgery and my thoughts are that enough time has passed for an objective self-evaluation of my condition to be noted.  

Considering the lingering effects of the March 15th surgery:  The roaring and rumbling noise coming from the within the confines of my own being occur as erratic and unpredictable as before as is already explained in the above essay.  There are times when it seems that the noise is lessening in its severity only for it to come back roaring with a vengeance for another 24 hours or so in its usual manner.  If the cause of the roaring is anxiety related as Levine stated the he believes it is I question why the noise continues after all this time has passed since the surgery and why it often occurs at times when I seem to feel the least likely to be anxious.  Such times often being when I am in a relaxed state or sleeping.  What makes this unwanted noise problem so very frustrating is that there are no known tests that I know of that could possibly determine the cause and no professional person(s) that I have been in contact with that seems to be able to give a definite answer.  Therefore no solution seems to be in site along with the fear that it might be long lasting if not a life long problem.  The latter thought scares me.  I will continue to update on the noise issue if and when there are changes or no changes or professional opinions that might give an indication as to the reason(s) and/or a possible solution.

Concerning my balance problem as noted in the above essay:  Daily physical therapy sessions have helped relieve some of the more extreme effects of the post-surgery balance issues.  However, I still have a constant tendency to alternately pull to the right and then to the left as I walk with a resulting slight stagger effect and unbalanced feel.  This balance problem is an irritating issue to deal with because I had always been well coordinated and athletic and never had to develop a consciousness of having to make an effort to walk in a straight line.  But since there has been an improvement over time I still hold hope that my balance will be back to normal one day in the future.

Something else that has puzzled my mind is why there was no account of the March 15th surgery in the records at the VA Medical Center as was also noted in the above essay.  Was it due to a clerical error?  Or perhaps simply by not recording the failed surgery would there be no record of a failed attempt on the resume of one of the participants?  It seems that it might be one of the many questions that will be difficult to get a straight answer and probably will never have a definite answer.

To make a quick conclusion about my CI surgery I have to say that there has not been one positive result that came out of that experience and therefore I have deep regrets about having it done.

To be continued with future updates.

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