"What HAPPENED to you?"
This is what I have heard from one Harrington-rod veteran after another over the past seven years -- and most recently and regrettably, from a new generation of Luque rod patients as well. So many of us who underwent spinal fusions for scoliosis -- who had "state of the art" hardware implanted in our backs, courtesy of the late Paul Harrington, MD, et al.-- were ultimately told that we were good to go. We were fixed, repaired; we were all better; we could expect to live long, normal, healthy lives, free of any further orthopedic or neurosurgical intervention.
And we were -- for a time. But then, maybe 2-3 decades later, and often (or so it seemed to us) totally out of the blue -- while our health and our lives were just fine, thank you -- we found ourselves metaphorically clobbered by reality.
Disaster
Boy, did we get a shock. And when the shock hit, we had no clue what was happening to us -- no preparation or frame of reference for the disaster that twisted our bodies and decimated our spirits.
For the longest time, moreover, our previous surgeons gave us little help when we reluctantly found our way back to them. The Harrington rod -- for thirty years, the "gold standard" of scoliosis treatment --was in fact a colossal bust and a widespread debacle; but for some years after surgeons began to grasp this reality, many discreetly declined to let us in on the secret. (One notable exception: Stephen Ondra, MD, and colleagues. Their 2003 article, "Management of Iatrogenic Flat-Back Syndrome," http://www.aans.org/education
Other doctors apparently just did not realize or recognize that people who came to them with old fusions, in terrible pain and increasing deformity, had anything diagnosably wrong with them. We can hope that more MDs these days are up to speed on flatback syndrome and understand the crucial importance of examining/x-raying the patient's spinal anatomy and mechanics in the sagittal plane -- i.e., getting the "side view."
As recently as eight years ago, however, a deficit of savvy doctors compounded our pain and confusion incalculably.
There were stories . . . .Some Harrington rod casualties, for instance, tried to see their beloved original surgeons and were flatly refused appointments. Some were handed dubious or even outrageous explanations as to why their original records and x-rays were no longer available. Many of the afflicted sought out new spinal specialists who ordered new spinal films, only to send the subjects away with the decree that everything was fine -- their fusions were solid, their complaints groundless.
Thus it came to pass that about seven years ago, at the turn of the millennium, a small group of us H. rod survivors found ourselves stumbling around in the dark, coping with intractable daily pain and progressive deformity which had come at us out of nowhere. As kids we had been diagnosed with severe progressive scoliosis (usually some time around puberty, so our condition was classified as Adolescent Idiopathic Scoliosis) -- a lateral curvature of the spine, resulting from unknown factors, with the potential to damage our hearts and lungs if allowed to progress unchecked. We had been through grueling adolescent spinal fusions, unsightly body casts (most often the infamous "Risser jacket"), disruptions in our schooling, months of enforced bed rest and isolation from other teenagers. Finally, at the culmination of a medical ordeal spanning months or years, our surgeons had pronounced us cured.
But now -- 10 or 15 or 20 years after that youthful "happy ending" -- something ominous and obscure was disrupting our adult lives: a whole new deformity, in a whole new plane. Put simply, the hardware had corrected our deformities in the coronal or frontal plane while destroying our lumbar lordosis and creating a whole new sagittal-plane deformity of the "hunchback" variety.We found ourselves bending further and further forward, unable to hold our bodies upright. We had to rely on shopping carts or walkers for support. Our necks were becoming stiff and arthritic from chronic hyperextension, that is, all the "craning" we had to do, trying to raise our heads to see where we were going. Our lower back pain was turning unbearable. Many of us had to stop working at jobs we loved. We had trouble with simple household tasks, with fitness regimens we had always enjoyed. Droves of us needed to abandon our beds for an adjustable reclining chair or perhaps a leased hospital-type bed -- finding it literally impossible to lie down in a supine position (let alone in a prone position, face down). We found ourselves grappling with exhaustion, with profound discouragement or even with clinical depression. We searched and searched for those special pain management programs and professionals -- in some regions, few and far between -- who could prescribe the kind of individualized regimens and interventions that might make our lives halfway livable.
Our best hope for substantive help, in terms of interrupting our anatomical decline, was also the most massive and scariest intervention available: incredibly specialized spinal revision surgery lasting some 10 to 40 hours, often requiring both anterior (front) and posterior (back) incisions, osteotomies (surgical fracture of the bone at stategic points), and major reconstruction of our "hunchback" deformities so that we stood straight and tall once more. Revision surgery was followed by long and grueling recovery periods with much therapy and rehab, during which we learned new ways of standing, sitting, moving, even putting on our socks and clipping our toenails, now that our newly remade spinal columns were rigidly fused as far down as S-1, the sacrum. The old hardware that had deformed us was replaced or augmented by shiny new surgical steel or titanium technologies affording segmental control of individual vertebral segments (vs. one long distraction device such as the Harrington).Revision dramatically normalized us in that we could now pass as "regular people" to the outside world. In very many cases it did not substantially improve out pain; we continued to try everything from spinal stimulators to facet-joint injections to nerve ablations, often with limited success.
At the beginning of our long "revisionary" journeys, though -- and every year, we encounter many more people like ourselves, newly diagnosed with flatback syndrome and only just beginning their own treatment-odysseys-- we were relatively clueless. What was wrong with us? What could we do about it? Where could we even find one of those few, rare surgeons who might help us to start living again? We felt desperate and lost, and often very much alone.Banding Together
When we ventured beyond our doctors, tried to research our condition in the medical databases, we found next to nothing useful at first -- even in the archives of the major national organizations dealing with scoliosis.The aging surgeons who had originally "corrected" our scoliosis and had sent us away with their blessing were not all retired from active practice. Out of respect for these "elder statesmen," perhaps, their younger trainees were hesitant to publicize the truth which was gradually dawning on the profession: The Harrington rod had been a mistake -- a well-intentioned but profoundly misguided approach to the surgical correction of scoliosis. It had crippled untold numbers of us and largely wrecked our lives. Our iatrogenic deformity went by the deceptively banal name "flatback [or flat back, or flat-back] syndrome." We know now, through the Scoliosis Research Society, that as many as one million of us have had or will need revision surgery for flatback syndrome and related issues stemming from the nonsegmental hardware originally implanted in our backs.
In our initial confusion, the saving grace was the Internet. Going online for answers, for some kind of hope or help, a small group of us did manage to find one another. We started sharing our stories via email or instant messaging -- sometimes, subsequently, via phone or personal meetings. We pieced together some hard facts, with considerable impetus from a set of informative online articles by a private individual, Elizabeth Mina. Elizabeth was a brave and gifted investigative journalist, and her pioneering papers explaining flatback syndrome were an inestimable gift to an entire generation of us H. rod casualties. She herself had undergone revision surgery very early on. She endured a number of operations, some of them primitive and damaging, which left her with considerable pain and disability but did not diminish her desire to help others in similar straits. I owe her a great personal debt, since she knew most of the very few surgeons who were dealing with flatback at the time of my own diagnosis (1999) and had unearthed considerable behind-the-scenes information. She steered me away from one surgeon who might have done me far more harm than good, and I am forever in her debt -- as are countless other flatbackers who recount how Elizabeth helped them to redeem their beleaguered spines and raise their plummeting spirits.The Most Drastic Step -- and the Mutual Support That Made It Possible
Eventually our small band of flatbackers -- about eight women at the time, mid-2000 -- persuaded me to start an online forum devoted to flatback syndrome. The Feisty Forum ( http://health.groups.yahoo.com
As mentioned earlier, a typical revision procedure may involve both anterior and posterior approaches, including osteotomy (surgical fracture of bone or cutting-up of a previous fusion) and extensive re-fusion using bone graft from the patient as well as cadaver graft. Revision surgery also entails the implantation of extensive new hardware, with or without complete removal of the original instrumentation.
Given the hazards of protracted general anesthesia and excessive blood loss, a number of revisions are done in two installments about one week apart, with each installment lasting nine or ten hours. Still, the patient may be vulnerable to post-anesthetic delirium or other ill effects. The estimated rate of minor and major complications for all flatback revision surgeries is 30 percent.
I myself have undergone six revision procedures, in addition to my two original spinal fusions for scoliosis. Thankfully, the revisions have normalized my outward appearance. I am currently fused from T3 to S-1 -- the chest area to the sacrum -- with an impressive collection of state-of-the-art hardware. Unfortunately my pain did not abate after the surgery, and I could not bring it under control with oral pain medications (which, in reasonable or therapeutic doses, exacerbated my preexisting sleep disorder -- narcolepsy -- so that I was chronically at risk of embarrassing and dangerous sleep attacks). Ultimately my doctors agreed that I was the "textbook candidate" for an ingenious medical device -- the Synchromed II pump -- which is implanted in the abdomen for round-the-clock intraspinal infusion of very small doses of narcotic. These doses are far more effective than larger oral or IV doses, since they go directly to the relevant area without first having to enter the systemic circulation. They also largely bypass the brain, thus minimizing adverse effects (in my case, excessive drowsiness and sleep attacks) on the central nervous system. I have had one of these pumps, with an attached catheter extending into my spinal canal, since 2005. Although I have needed additional surgeries to fix mechanical and other problems with the pump, it has been, overall, a major blessing in my life, reducing my daily pain from an average of 9-plus to an average of 4-5 on the old 10-point scale.
Coming Back to Life
In the earliest years of this disability, things were far worse. Along with my son, then in high school, I chronically teetered on the edge of abject poverty. I sold the family furniture at auction, hocked anything I owned with any resale value, saw my car nabbed by the repo man and my landlord waving an eviction notice. It is difficult even to reminisce about that period, when each day was an exercise in desperation -- when I was chronically terrified about providing for my child, while carrying my torso at a 90-degree angle to the ground, hanging on tight to my walker, and attracting pitying or horrified stares wherever I went.
Things are better now. But things are not yet where they should be. My life is not right. I need to change things. I need to change myself. This is the year I will.I am sure of it. I have decided.
This us the year I rise up singing, publish my writing once more, make good money, make even more good friends.This is the year I will wholly live once more -- the momentous year, the turning-point year.
This is the year I begin anew to become the person I am meant to be.I anticipate a rough and exhilarating ride over some rugged highways -- over glare ice and potholes and roadblocks.
This year, with unshakable determination and unwavering commitment, I make the imperative journey back to me..The Street-Corner "Prophecy"
I have known for some time that I must do this. About four years ago, an older gentleman in an elegantly wrapped turban, standing outside the Osco Drugstore on the colorful Chicago street known as Devon (with the accent on the second syllable -- don't ask!) -- gave me quite a compelling sales pitch for allowing him to read my palm. I finally decided, well, why not, and extended my hand. for his scrutiny. Soon he was telling me, rather excitedly, "In five years, you will no longer recognize the life you are living now!" He said that I would become a teacher or coach in some capacity, that I might travel and make speeches -- that I would experience new involvements and endeavors I could not even imagine as I stood there outside the Osco in 2003.
As I slipped him my modest donation and thanked him for his services, wishing him well on his upcoming return-trip to India, he interjected one last comment, with a note of stern caution: "But take care of your feet!" And to be sure I understood, he repeated it even more emphatically: "You must be sure to take care of your feet!!!!"Several months ago, I finally took care of my feet. I let the podiatrist tackle my giant bunion and gross old hammertoe at last, performing mini-osteotomies and setting me straight. The process wasn't quite like any of my massive spinal surgeries, but it did hurt like the dickens; for a week, I wondered if I had make a dreadful mistake, if I would ever walk again. But the body heals, and so does the mind. The human organism is wonderfully resilient, with fantastic capacities for regeneration and healing. I am now very pleased with my feet, and even with much of the rest of me. I have what I need now. I am ready to travel.
I am ready to create and live that whole new life predicted so confidently by my turbaned friend.Come with me, why don't you? This is going to be a great, grand year. I would love to share my saga with you as it proceeds, especially if you are, likewise, determined to build your own second incarnation from the dust and ashes of the old . . . if you are prepared to rise like the mythical phoenix out of your dying and into your being born.
Let's be bold and take risks. Let's be mindful and take breaths. Let's become prosperous and expansive and giving -- just think what we can do with the wherewithal to start whole foundations and coalitions. Consider what suffering we can alleviate, what injustice we can redress, how much we can do to mend this battered world.Tell me your wild, vast dreams and farthest-out plans as I confide my own. Let's share our amazing, unfolding stories. Let's get heady. Let's go whole-hog.
We can fly. We can move mountains, even from a walker or a wheel chair. As the classical Indian dancer put it, inexplicably resuming her career after a horriblen accident and a leg amputation, "You don't need feet to dance."We have everything we need, as Bob Dylan assured us long ago. ("She's got everything she needs, she's an artist, she don't look back/She can take the dark out of the nighttime . . . ")
We're beginning.
It's our time.
We can soar.We can shine.
Am I wrong?Take a chance --
Come along . . . .
No comments:
Post a Comment