by: Pearline Campbell
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I am a 53 year old mother of four and grandmother of nine. I am the only living child and primary caregiver of aging parents in failing health, who live with me and my husband of thirty-three years in a big old house in Lynchburg, Virginia. I am active in my church, I work in our family business, and I enjoy reading, writing, and researching our family history. All but one of my four grown children, three daughters and a son, live nearby. The duties, responsibilities, and activities associated with this large, active family are, for the most part, exactly the kinds of things I had always envisioned would be a natural part of this stage of my life. What I didn't expect was the major complications that were to slow me to a screeching halt in my already physically challenged life. The telling of my story has been a long time coming. The purpose is not to elicit sympathy, nor to make excuse for myself for the many things I can't seem to get done. In all honesty, I'd have to say that the first and foremost reason for writing my story is a personal one: the very real, basic human need to be understood. Secondly, to provide some measure of hope and to offer support and understanding to others who have suffered a similar fate. And thirdly, to hopefully, raise awareness of both the medical profession and the consumer of a little known, poorly understood, often undiagnosed, but unbelievably devastating side effect associated with the use of the commonly prescribed antibiotic, Gentamicin. The onset of what was to become my life's greatest challenge was September 1991. The circumstances leading up to it, however, began at birth. I was born with dislocated hips, but it was not diagnosed properly until I was eight years old. When I began walking late, at age two, and had an abnormal, sway-backed gait, our family doctor thought that I had had a light case of polio, which was very common in the late 1940's. A routine screening by a school nurse in second grade led to an examination by an orthopedist, and in the summer of my ninth birthday, surgeries were performed on each hip to put them in their proper place in the sockets. Unfortunately, at that time, it was standard procedure to remove all of the cartilage that had grown thickly over the ball and socket, which then exposed the bones to unusual wear and resulted in degenerative arthritis. By age 26, my hip joints had deteriorated severely, the pain was excruciating, and range of motion severely limited. Total hip replacements were, at that time, in the experimental stages and had been perfomed only on older patients. There had not been enough history to predict their durability in a young patient, but notwithstanding that reservation, the doctors felt that was my only option to avoid permanent consignment to a wheelchair. In the fall of 1971, the chairman of the department of orthopedics, Dr Roby Thompson, at the University of Virginia performed the surgeries; and within a year, two additional surgeries to repair a fracture and to remove surgical wires. I soon began to feel like a new person. I had less pain and better movement than I had ever previously known, and more enjoyed my life with my husband and four children, who then were from preschool to preteen. Ten years passed, I was enjoying my third year of employment as a teacher's aide in special education when the replacements began to fail. The cement loosened in the hip joints -- a natural process of the body's battle with a foreign substance -- which necessitated replacements with larger, better designed prostheses. A total of seven replacements/revisions and several less major procedures have been done in the intervening years. The last three replacements were done with massive bone allografts, using a biological implantation method to effect a more permanent union of bone and prostheses than can be achieved by the standard procedure of cementing-in the prostheses. Allografts are bones taken from cadavers of those who have donated their bodies to medicine. The recuperation period is much longer using bone grafts -- nine months to a year of non-weight-bearing as compared to the six to twelve weeks with the cemented procedure. During the sixth replacement surgery in the Fall of 1991, serious problems developed. Random samples of bone and tissue are routinely taken during surgery from all areas of the operation site to test for infections, etc. Within days, three strains of bacteria were cultured from the donor bone, requiring aggressive antibiotic therapy. A specialist in infectious disease was called in and a plan was made to begin a 30-day treatment of intravenous infusion using two broad-spectrum antibiotics, Vancomicin and Gentamicin. Seven days post-op a catheter was inserted in the subclavian artery, just above the heart, and after arranging home nursing care and my family's training in the administration of the IV medication, I was allowed to go home. The first symptom appeared on the twentieth day of antibiotic therapy. My oldest daughter, (the best nurse in the world not formally trained as one) had packed up all the tubing and paraphernalia and wheeled me out on my front porch to get some fresh air. I noticed I was unable to visually track moving objects -- I couldn't visually follow the cars traveling down my street. Shortly, that escalated to the terrifying constant sensation of falling backward -- the feeling of panic that you'd experience at the very instant of falling backward off a cliff. Acute nausea/vomitting followed. My mother, who lives with me, called in all my available family. I was so miserable, I told them, unless I lost consciousness, to please not try to transport me to the hospital. One of my daughters had an idea to try different positions; and propping me up at a 45degree angle seemed to very slightly minimize the tumbling. My doctors were called, and they actually made long-unheard-of, house-calls. They seemed caring and concerned, but had no help to offer. Not even much of an explanation. Just that it was a rare reaction to the antibiotic called ototoxicity, and it affected the vestibular nerve in the inner ear that controls balance. Gradually, as I got worse, I got better. That sounds like a contradiction, but, as the Gentamicin toxicity caused the damage to the vestibular nerve, it was like a chemical burning of the little hair-like nerves. As the nerves initially began to malfunction, they sent erroneous information to the brain concerning the percieved position of the body in space, causing me to feel like I was perpetually falling backwards. The eventual total cessation of the erroneous information was somewhat of a relief. Within a few weeks the nausea subsided, and gradually over two to six months the false sensations of movement gave way to a "silencing" of all equillibrium-related messages; a complete inability to balance. Healing of femoral allografts requires non weight bearing for a period of nine months, so it was a very slow process becoming acclimated to the loss of balance, progressing from about a year of wheelchair dependence, to about two years of pushing a strollator walker, a cane, and then sheer faith and willpower. I had no professional help or instruction during the first two and half years. And no professional evaluation of the extent of the loss. One of my first trips, when I was able to ride in a car, was to the Medical Library of the University of Virginia. Information was scant. The most sure fact was that there was no cure. I had already faced many challenges in my life and had gained a reputation of tenacity, courage and faith. With that legacy, I had no alternative but to live up to it. A passive acceptance just was not an option. After a long meandering search for someone, anyone, who knew anything about what I was experiencing, I found a clinic in May of 1994. It was about two hundred miles away and specialized in balance disorders and had an associated support group. My husband and two of my daughters took me to Atlantic Coast Ear Specialists in Virginia Beach. There, I was tested and found by Dr. Richard L. Prass, to have "complete absence of any measurable activity of vestbulo-ocular reflex" --"the distinction of having the lowest gain (output) we have measured by rotational chair testing." Officially, now, the damage was 100% -- and irreversible. They said that physical therapy can offer some help adapting. As they suggested some exercises and strategies, I realized what a great role inspiration and instinct had played in my progress so far, for I had already instinctively been doing most of the recommended exercises and developing the necessary coping mechanisms. For the sake of information: the human balance system works in an integrated triple system:
With the loss of the vestibular nerve the brain relies on the other two systems, vision and neuro-muscular sensation in the legs; both of which, in my case, were also impaired. My hips/ ankles impaired by my hip condition; and my eyes by the oscillopsia that accompanies the loss of vestibular neural pathways from the eyes to the brain. (more on this later) I have come to believe that somehow, given a chance, the body can and will compensate, remarkably, for any and all injuries. I have developed many coping strategies to help me stay upright. Keeping even one finger on a stable object helps, as does stabilizing my gaze on a stationary object while walking. I learned to minimize the risk of a fall in the shower by sitting on a shower seat, but, at first, I still reeled and fell often when closing my eyes to shampoo, so I learned that keeping my body aligned so that the flow of the shower centered on the top of my head could give me a point of reference to stay balanced upright. Eventually I adapted well and can sit safely in my shower. My ankles have become loose and supple as I have used them to adjust my stance to stay upright. Going up or down a curb without an aid is a challenge, so I have to allow myself room to stagger and readjust my gait after the step. It looks strange, but, Hey, it keeps me on my feet! Crowds are almost impossible for me to navigate alone. Movement in the periphery can't be discerned from my own movement. When I'm alone in a crowd inside, I try to hang on to walls, but in an outside crowd when there's no stable, unmoving reference point like a hand rail, I am virtually immobilized. A well-meaning person, courteously opening a door for me can cause a total belly-flop if they open it further for me when I'm already midway through it, holding on to it. I consciously time my entrance and exit where possible, to either go through a held-open door without touching it, or to have singular control of the door. Darkness also immobilizes me; I am almost sure to reel when going from a light area into a dark area or vice versa. In the sun, my own shadow throws me off as it moves. Vehicles moving alongside my path "loose me" from the perspective of my own position relative to my surroundings. You may have experienced that yourself: have you ever jammed on your brake, only to discover that it wasn't you moving, but the car or train beside you? The wind often "blows me away", I'll be walking along and a gentle puff of wind will disturb my rhythm enough to send me reeling to the ground, or vice-versa: I'll be bracing against a breeze, and when it stops or changes direction, so do I. Once, after saving me from a fall, my second daughter said "Mom! That was close! We've got to learn to factor-in the wind!". We all broke out in laughter, and I realized at that moment how important it would be to improve my sense of humor in order to deal with the embarrassment of the stumbling, staggering and falling in public. Up to this time, I've been pretty sober, not at all naturally blessed with much of a funny-bone, so that's a whole new quest for me. My family laughs with me a lot, because we have a common ground of understanding, but with others, who have no basis of reference, a joke about my appearance is totally irrelevant. About the best I can do so far, is try not to allow myself to feel like a victim when my appearance is often mistaken as the effects of alcohol or drugs -- a real insult to my integrity. Sometimes I'd like to wear a tee shirt with four-inch letters declaring "I am not drunk". I do feel I have made a great deal of progress, though, since the overwhelmingly humiliating necessity of crawling on my hands and knees to get up the front steps of my house. I no longer cry every time I fall; ~ only sometimes. I am now fully ambulatory without aids, but at great risk of injury because of frequent falls. I cannot walk on uneven ground, in gravel, snow, on ice, in sand, or in tall grass--at all, not that it's difficult for me-- it's just not possible -- even plush carpet is marginally navigable. There is not enough stability to allow referencing of 'place in space'. Loud noises are also a hindrance to me, perhaps breaking my concentration -- or causing a sudden flinch -- or whatever. And my hearing is hypersensitive with constant tinnitus in two tones: a high-frequency ring and a low-frequency drone. There is a driver in my neighborhood who blows his horn everytime he approaches my next door neighbor's house. Once, when I was just about to step off the curb, he sounded his horn. The next thing I knew I had hit the pavement. That's the way it usually happens: I'll have no clue that I 'm falling until I feel the impact. Sometimes, though, I will fall during an effort to stagger to regain my footing. At such times, I can usually manage to roll enough to avoid injury. I have experienced a sprained wrist requiring a splint for several months. I almost always wear pants or long dresses because bruises and scrapes are a constant. I currently have a neural esthesia in the left side of my face, resembling the numbness of post-dental work, the result of a fall flat on my face several months ago that caused a fracture in my cheekbone, and damage to a facial nerve. I once had a frightening experience in a motel swimming pool; becoming disoriented in the water, I couldn't sense up or down, and would surely have drowned without help. Thankfully, my family members were nearby. Of course. We all realize by now, that there are many things I will never again do alone. By far, the most frustrating part of this affliction has been the Oscillopsia. A normally functioning vestibular system sends a constant message to the eyes to compensate for movement, allowing the entire view of the environment to appear stable, regardless of body or head movement. Without that message to the eyes, they are unable to make any adjustment for movement. The result is a constantly jumping, bumping and dancing world. For example, if I nod my head in a gesture of "yes" or "no" the person I'm looking at appears to bob up and down or sideways in direct relation to the extent and rapidity of my head movement. Everything in my field of vision moves at the same rate as the movements my body/eyes experience. The same applies to any and all movement. The best way I can describe the effect is that the way I see things is the same as a basic camcorder, with the same limitations. For example, if I'm riding in a car, every bump or sway causes a corresponding bump or sway in my visual image. Distance is a factor in how I percieve the movement of an object in view. For example, imagine a typical view while riding in a car: A bump will cause a small perception of movement of all near objects, such as the instrument panel. During that same bump, further distant objects like the car immediately in front of me moves about the height of one car; a further distant oncoming car appears to oscillate the equivalent height of several cars; and the horizon appears to move the equivalent of several hundred feet. On a more finite level, if I am lying still, in bed, with my head supported by a pillow, even the minute movement of my own heartbeat prevents me from seeing a splinter in a finger, or fine print on a label. The best way to simulate this inability to compensate for movement for a normally sighted person to understand, is to record with a camcorder, without a tripod, with bumpy, vibrating or unstable conditions, such as driving on a gravel road. Then try to view the tape on a large television screen. The resulting image is roughly how I see my world. One of my adaptive helps is my "Big Ben" watch. It's almost as wide as my wrist, allowing me to see it quickly. A normal size watch requires me to get both myself and my watch still in order to catch the image. Another rather strange effect of this condition has been a low range of temperature tolerance. In temperatures above about 90 degrees my face becomes flushed, I perspire profusely, and, since I lack the ability to feel dizziness, can come close to fainting without any clue to its onset. In cold temperatures, shivering progresses to convulsive levels, making it impossible to comprehend the violently shaking visual field; or indeed, to move myself at all; feeling, in effect, that I am being shaken loose from a nonexistent foundation. There is the same effect from the tremors that normally accompany simple nervousness, such as I have always experienced, (as many do) with occasional speaking assignments, or teaching a class. I find it somewhat helpful to plant my feet firmly, wide apart, and hold firmly to the podium. Printing out my notes in very large dark print can help me see them, but only if I can remain calm enough to keep the tremors to a minimum. I am not unique in the response of nervousness to these kinds of situations and responsibilities, I just have a secondary problem to contend with, in that, I become unable to see, which would prevent me from continuing, which, would then, in turn, cause me further embarrassment, since few, if any of my audience would have any idea what in the world was happening to me. In very rare instances of extreme nervousness, a grave emergency, or emotional stress I can become entirely disabled, becoming unable to speak understandably, or control movement. It must be born in mind here, that I have never suffered from any kind of panic attacks, phobias, or neuroses. A Psychological Evaluation by William R. Butler, M.S.W. bears out my own assessment of my emotional, psychological, and spiritual health. In his words, I was considered to be "well oriented, highly motivated", "very upbeat, with lots of energy and spirit, and strong attitude". Again, his words -- and I agree: "moderate levels of anxiety and depression are less than one might expect considering what has happened to her". The wonder of all this is that the human body and mind has the capacity to adapt, compensate, substitute, improvise and cope with all but the worst of these seemingly totally debilitating changes. The first time my husband took me out in the car after the toxicity, was to me, worse than any horror story, second only, to the initial feeling of constantly tumbling backward. I was totally disoriented, could not focus on anything as it danced and sped by, could not read even the largest of signs when the car was moving. And my hopes were very dim, knowing that vestibular damage is irreversible. The highlight of that day was that, at least, the nausea had subsided; in fact, I learned later, I would never again suffer from motion sickness or seasickness. The mechanism that governs balance and the vomiting reflex with motion is one and the same, and mine would no longer function. Incidentally, this effect is very popular with my grandchildren. I can outlast the best of them on the most daring roller coasters. I would not even detect the movement were it not for the whipping and flailing of the body by inertia. Speaking of inertia; starting and stopping from moving causes my head to sway each time. This has improved greatly, as my neuro-muscular reflexes have become finer tuned, quicker responding and more accustomed to this adopted duty. My first post-trauma trip to the supermarket with my oldest daughter was extremely fatiguing. Everything was a blur, similar to looking out the window of a speeding train. There has been tremendous improvement in that perception, which I now know was the rudimentary efforts of my neuro-muscular system trying to make minute counter-movements to compensate for movement. It was almost humorous that the soup aisle looked like Old Glory furling in the wind. (Because of the horizontal red-and-white stripes of the Campbell Soup labels.) During the period of the first two to three years, as I very gradually adapted, my brain seemed to uncannily develop the ability to unscramble the blur of movement into an interpretable "best-guess" image that I could use to restructure a system capable of some functionality. I liken it to a very jumpy filmstrip that would seem to have more clarity if only every fourth frame were visible, eliminating some of the "visual static". I wonder if that may be the method my brain has developed to allow me to read road signs -- just skip several microseconds of input at regular intervals, and the resulting information may be more easily processed. I wonder, too, if it may be akin to speedreading methods. At any rate, this adaptation, along with generous encouragement from my husband and children, and many car rides with them, each ride becoming a little less frightening and overwhelming, allowed me to gradually start to drive my car again. I think that the very stimulation of the eyes/brain trying to adapt and make sense of the rapidly moving objects and attempting to calculate my own 'relative specific movement' within the blur of the 'general environmental movement' gave my brain experience and it naturally developed a process that allowed me to drive with progressively increasing confidence and reliability. I now drive anywhere I want to go. Last year I was driving alone a 1,500 mile, overnight round trip to Columbus Ohio twice or three times a month. It did take quite some time to adjust to the night-driving images. Lights at night take on a "trailing" quality. The oscillation of movement causes the same effect seen in time-lapse photography of moving lights or traffic -- an interesting effect in a photo, but difficult to navigate a car through. Somehow the brain seems to sense which is the realtime image. There seems to be a price to pay for this increased sensitivity -- these compensatory measures my brain has naturally developed to deal with its challenges: I now have a much-diminished capacity for critical thinking, get headaches often, and tire easily. I get confused, and "lose" simple words in my everyday speech -- a kind-of momentary aphasia. I have a much greater tendency to procrastinate and have mood swings and depression. The ever-pulsing visual static makes working at my computer (a favorite pastime as well as one of my business duties) especially fatiguing. A great deal of brainpower is required for the conscious mind to assume the duties that the vestibular system once did automatically with effortless ease. One of the less obvious effects of this condition is a feeling of isolation and loneliness, a feeling that no one understands me. I've been struggling with this condition since 1991, and still, some of my close associates will ask (I'm sure with the best intentions) questions like: "Do you still have those dizzy spells?". It would take a long, long time to explain to anyone that I am incapable of feeling dizziness and how I see the world is much different than their view. Few, if any, other than those I live with, have ever even asked anything about it. I choose, most of the time, to interpret that as a compliment to my ability to compensate, although in rare depressed moods, I see it as indifference. I realize that my behavior may sometimes be misinterpreted. For example, the necessity of fixing my gaze on something stationary may leave the impression that I am ignoring those around me. When I'm out in public, the simple act of just walking along causes so much "dancing" of my field of vision, that it isn't possible to recognize any individual, even very nearby; so, some may wonder why I have passed right by them without even acknowledging their presence. I, myself, very much miss that kind of interaction. I now realize why I changed my customary seat in church from the front row to the back row. It is such a joyful feeling sitting there, still, and just "absorbing" watching so many dear friends -- still. I am blessed with a very supportive family, and a circle of good friends, but there remains that basic human need to be understood. I realize it is impossible for anyone to truly understand how my life has been affected except those few who share the same plight. At this time there are approximately two hundred, sixty identified survivors of Gentamicin Ototoxicity across the country and the world who have joined a group called "Wobblers Anonymous". The national support group was founded by Lynn Brown of Pell City, Alabama. A real "dynamo" former flight attendant whose wings were clipped prematurely, by Gentamicin. Distance prevents us from being closeknit, but it fills a need just knowing that someone somewhere understands how it really feels to be "lost in space". By writing my story, I, myself have come to a better understanding of my own feelings, and perhaps I may be better equiped to discuss it when the subject arises. Life goes on; and the normal, (and sometimes marginally normal) events of life continue. Since losing my navigational faculties, five grandchildren have been born. (bringing the total to nine). I manage to spend good quality time with each of them, but with something as simple as the Grammy-duties of babysitting, modifications are necessary. I don't dare carry the babies in my arms unless they are very small and I have the support of a wall or furniture to lean against. A romp on the floor is best with the bigger toddlers. I don't hold the small children's hands crossing the street -- the older children or adults have to hold my hand! My youngest child -- my only son, age 29, sustained massive head injuries in a traffic accident four years ago. My disability added to the difficulty of coping with the situation, as we stayed with him for two months in the critical care unit. My clumsiness was exacerbated by the emotional stress of the uncertainty of his survival, and the extent of the brain injury if he should live. Thankfully, he has made a good recovery, -- except he is permanently blind. His marriage ended two years after the accident, so it is the responsilibity (and blessing) of the family members to assist him where needed. He is very capable of doing much for himself, but I help him with transportation, reading mail, filing papers, and sometimes reading his computer screen when his speech synthesizer experiences a glitch. When we shop together we are like the "blind leading the blind". Then, there's two of us suspected "drunks". What I'd like to see is more exposure to the public in general, -- and specifically to the medical community, -- of the devastating side effects that can and do occur with Gentamicin -- and many other medications. Whether the drug companies are not always thorough enough in providing physicians with sufficient information on safe dosages and possible side effects; or whether physicians are overworked, overstressed, and lack the time to stay abreast of current research, is a matter to be taken up by more qualified professionals, but it is my firm opinion and sincere hope that more attention should be given to the real-life stories of those who live their daily lives with the life-changing, devastating effects of some very commonly prescribed drugs. One disturbing research from Australia in 1994 suggests that there is no safe level of Gentamicin. According to that report ototoxicity was experienced by some patients after a single day's dose. I consider myself very fortunate in many ways. Gratefully, I still have my hearing. I learned that Gentamicin ototoxicity can cause profound deafness. I am very grateful not to have had to also make the overwhelming adjustment to deafness. I, early on, realized what a great blessing it is to have a 100% loss of vestibular function, rather than to have a small percent of function which would send to the brain erroneous messages, making it more difficult to make the shift to a total reliance on the alternate systems (sight and neuro-muscular). I am thankful for my loving, kind husband, who has been a motivator and a support; and for my parents, children, grandchildren and friends for their help and their patience; my orthopedist, Dr. Harry C. Eschenroeder, whose skill has restored my ability to walk, and whose personal kindness has been exemplary. I am thankful for my faith in a loving God who loves and cares for each of his children; the faith that has given me hope in the darkest of times, sustains me daily, and brightens my hope of the future. At this time, approaching the new year of 1999, I am able to go (almost) anywhere, at (almost) anytime, alone, unaided, but it has taken a great deal of commitment, practice, support, and humor. The limitations that I have been describing are things I feel I can now live with comfortably. I have come to accept them as constant exercises in humility, more than physical hinderments. What I have gained back is almost 100% independence in the most essential activities of life, and what I have lost is a great deal of my pride and vanity. I hope to continue to apply a positive attitude in my life and learn by all experiences to face the future with grace, dignity, and hope. I extend my support and understanding to all who have been similarly affected, and my encouragement to everyone, especially physicians, to be informed and weigh the potential risks, as well as the great benefits that can and do occur through the use of the powerful drug Gentamicin. Brief Update 10/20/02 Some things have changed in the interval since this was written. I am now 57, have 10 g-children, and a great-g-child. My father died here at home, my mother is still with us, in late stages of Alzheimers. I was rear-ended and had a whiplash injury very shortly after finishing my story and experienced a major setback. I thought I understood the compensation process pretty well because I had made such great progress, but I had no idea how extensively I had relied on my neck muscles in particular for balance input. I had to again resort to the use of my strollator, had physical therapy for 17 months, chiropractic/acupuncture for 16 months, and was unable to drive for 3 years. I'm thinking I'm now just a little short of being back to what I call my "baseline", and have just begun to drive again in the last 3 months. Just facts, here. I still am optimistic and feel I have more blessings than challenges. Take care, Pearline As you read this booklet, I want to make it clear, that I personally, hold no bitterness, nor do I blame any particular individual for my condition. No demands or expectations are made on the reader in any way. My purpose, as stated, is to seek understanding, offer support, and raise awareness. I have no use for pity. I seek no notoriety. Anonymity would be preferred, but would not fulfill my stated purposes. I am Pearline Campbell, and these are the facts of what happened to me. It could happen to anyone. If it has, God bless you in your quest to deal with it. If you are a physician or health care professional, or an agent of the information media, PLEASE share this awareness with your patients, your readers or viewers, that others might be spared this difficult challenge. If you are one of my friends, please don't treat me any differently. If I am sowing new self-challenges by opening myself up to the view of others, I pray that that vulnerability might spawn personal growth. Sincerely, Pearline Campbell * The author welcomes questions or comments by phone, mail, or e-mail. Pearline Campbell
* Information about vestibular/balance/hearing disorders is available through the following national support group. A special packet is available to Physicians and health-care professionals. VEDA (Vestibular Disorders Association)
* The Gentamicin Ototoxicity support group can be reached at the following address.
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