A Mistaken Premise
Perhaps this should be titled,”Passing the Buck.” or, ” The Ole Boys' Club. or,”Strange Gods Before Us.”
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Much of what follows appeared in my prior posts. I believe in the context below, there is justification for all of the above titles to describe my experiences with neurologists and other neuro-physicians. In all fairness, there were a few doctors who really tried hard to be of help, but far too many who just sloughed me off with a shrug.
While in recent years we have learned some of the workings of the brain, there remains an ocean of the unknown. Other than diagnosing within the limits of current knowledge or prescribing the few medications that may offer a small degree of help, there isn't much that a neurologist can do to assist his patient other than spewing forth labels and diagnoses in medical jargon puzzling to the patient.
I, in turn, must accept my own failings for not seeking a second opinion before the surgery that seriously worsened my condition, or not;testing the premise that vestibular training would put me on the road to recovery, which so many of the neurologists suggested.
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My brain stem stroke anniversary at age 75 is now thirteen years. I progressed from being unable to situp in bed, to wheelchair, to walker and finally a single point cane during the first year, as a result of determination and conscientious physical therapists. However, despite strengthening of my right side and general body tone, I plateaued with my vertigo and ataxia problems and decided to undergo vestibular training which was recommended by a few neurologists I had seen.
After a few sessions, my therapist noticed a horizontal shifting of my eyes and I was tested and found to be nystagmus positive. I was referred to a neuro-optometrist for possible improvement and the hope that I can resume the balance training. Unfortunately, my vertigo, double vision, nystagmus and balance problems did not improve with the optical training.
I continued seeing neurologists and other neuro- specialists, all of whom were of a same decision after two or three sessions, that they could not help me; with a majority suggesting that vestibular training was the only alternative. I revisited the neuro-optometrist who referred me to a neurologist whom he stated was the most capable in the county and most apt to help me.
During my first and only visit with the referred neurologist, I sensed immediately that he was obnoxious and had a God complex, but decided to to follow his suggestions after he explained that my vertigo and balance problems were the result of stroke damage to the right ear vestibular nerve which is garbling messages from the brain, thereby causing vertigo and balance complications. He recommended a procedure that included 3 injections of gentamycin over three weeks that will destroy the troublesome nerve which will remove any right side balance but will be compensated by the left side of my brain after a period of vestibular training. I was elated as his suggestion sounded logical and I was given hope for the first time. He stated the only risk involved is the possibility of losing hearing in my ear, which is trivial considering the gains I will experience and referred me to a neuro-otologist.
I searched the Web for information regarding the procedure which was best explained by Dr. Timothy C. Hain, a highly regarded pioneer who utilized the procedure for Meniere's Disease, which has symptoms similar to my own, but I couldn't find anything connected to stroke conditions. Dr. Hain warned against using the three injection method in individuals over age 70 whom should be treated with an injection of a lesser dose not to be repeated, unless needed after a period of several weeks or months.
I mentioned this to the otologist before the procedure, stating that I wanted the lesser procedure that Dr. Hain recommends. He replied that he is familiar with Dr. Hain and holds him in high regard. I interpreted that he was in agreement and will not administer the three full dosage method and scheduled the procedure for the following week.
Immediately after the injection, I was unable to stand alone and leaned on my son who accompanied me. There was no improvement in the weeks that followed. I was no longer able to drive and had to revert to the use of a walker. I phoned the doctor and he told me to wait a month for improvement. After a month, I contacted him again. He stated I should have allowed the three weekly injections and that I am a difficult case and suggested I get a second opinion.
I met with another neuro-otologist who said it is too bad that I did not meet with him prior to the procedure as he would have warned me against it since a brain related injury cannot be corrected by treating a peripheral area. He advised me not to consider further injections to maintain what little balance remains on my right side. He then suggested that I enter a rehab facility for three months of PT to improve my balance. At the close of our meeting, he evidently thought he did not want to chance being critical of an associate in his field or the possibility of a court action in which he may be called as a witness, so he concluded the visit by saying, “Maybe, if you came to see me first, I might have considered the procedure.” (??)
I was very damaged and angry by the above mentioned experiences. I contacted seven legal firm seeking legal action, none of whom would consider the case. Two attorneys from separate firms had the courtesy to call and explain why they refused representation, both giving the same reasons,”Since it involves a preexisting condition, a jury hearing will be involved and the best outcome might be a settlement that may not even cover expenses as it is likely that two physicians will cover for each other.” I contacted the surgeon's insurance company and after two years of negotiation, settlement was reached for an amount far less than I felt I deserved, but probably more than may have been realized through court action.
After seeing a dozen neurologists, I finally accepted the word of a doctor with an excellent national reputation. He agreed with others that recovery is not in store for me, as I fall in a small group for whom there is no improvement. He also stated that vestibular training will be of no help for improvement. During a visit with a neuro-opthamologist, I questioned him as to why so many neurologists have recommended vestibular training. He replied that many doctors who feel that they can't be of help to a patient, like to believe that the patient leaves with some ” hope.” (??)
It is just this “hope” that sent me on a a quixotic journey of dashed expectations. I am reminded of a recent experience of having our laundry dryer properly vented. I asked the mechanic if he would also clean out the lint to avoid the possibility of fire since it hadn't been cleaned for years, He agreed to do it without charge and removed the front panel and gave it a swift cleaning of the little lint that had collected there. I later searched the Web, and discovered that most of the lint collects in the rear of the dryer and is the major hazard. I e-mailed the mechanic, thanking him for offering the cleaning for no charge,but warned that the dryer owner is left with the notion that the threat of fire is diminished when in reality the threat remains.
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