THE SHORT ANSWER:
My original problem was idiopathic scoliosis -- a lateral curvature of the spine especially common among adolescent females, cause as yet unknown.
I had 13 or 14 thoracic vertebrae surgically fused -- one vertebra for each year of my age -- and lived in body casts for 18 months.
A fusion destroys the individual vertebrae; the fusion mass is like one long, rigid bone. The unfused vertebrae have to work harder to support the whole works. They tend to break down over time: The cushioning disks between the vertebrae wear out and arthritis sets in. By my late thirties I was in considerable pain from so-called "scoliotic deterioration." The experts said I needed more vertebrae fused, and they set to work destroying most of my lumbar region as well. This time they also implanted a popular piece of spinal hardware, the Harrington rod.
I told myself I was better and got on with my life. Then, In my late forties, I found myself turning hunchbacked overnight. Eventually I was carrying my torso at a 90-degree angle to the ground, rigidly fixed in that crippled, hunched-over posture. I had to use a walker to hold myself up when I moved around. I developed cervical arthritis and neck pain from craning my neck to see anything ahead of me as I walked. I could not lie flat in a bed and had to sleep in a recliner. My pain became unending and climbed to 8 or 9 on a 10-point scale. I was forced to give up on two careers -- my first as a medical writer, my second as a health law attorney. I struggled to support my son and myself on a disability stipend, a modicum of child support, and the kindness of family. My life verged on becoming unlivable.
I suppose I had considered myself a bit of a hot shot during the best 20 years or so. I had flown around the country on an expense account, covering medical symposia and science writers' seminars for publication. Then, at 33, I gave birth to my son Matthew, feeling wonder move through my organism and grace light my life. A few years later came the Harrington rod surgery, followed by some personal/existential reassessment and regrouping. Eventually I went to law school in my forties. After being admitted to the bar, I spent a few years as a consultant to a forensic psychiatry institute --writing grant proposals, publishing legal analyses and the occasional Op-Ed, designing and administering new research programs. It was not a bad life. I even remember some good times in my long but dysfunctional marriage. After I turned flatbacked and fiftyish, however, things began to feel pretty surreal. During the long waiting period for Social Security Disability benefits, I was forced to sell the family furniture at auction and accept provisions from food banks. Thanks to a helping hand from a charitable organization, Matt and I narrowly escaped eviction from our apartment. Throughout the struggle to keep us afloat, I was also contending with the daily demon of excruciating physical pain. As I became more and more bent, anatomically speaking, I attracted pitying or horrified stares wherever I went.
My spinal deterioration following Harrington rod surgery has turned out to be typical of individuals with so-called flatback syndrome (loss of lumbar lordosis, also termed fixed sagittal imbalance). The major cause of flatback syndrome is the Harrington rod . Lately spinal surgeons are also seeing some patients with flatback caused by Luque rods, which were introduced as an improvement over the Harrington instrumentation.
In 2000, I started the "Feisty Forum" -- http://health.groups.yahoo.com/group/FeistyScolioFlatbackers/ -- as a support group for those of us with flatback syndrome. We began with 8 members -- 8 frightened but determined women in search of practical information which we could use to help ourselves and others. At that time, digging up accurate facts meant adopting some of the skills and strategems of a private detective. Few researchers or physicians were able or willing to level with us. If the Scoliosis Research Society was discussing our condition at all, it was in closed sessions. My own Harrington rod surgeon, a younger partner in an internationally esteemed group, had finally broken the news to me that I had a condition called flatback syndrome, but he insisted erroneously that this was caused by "your disk disease." Thankfully the next few doctors I consulted told me the truth, that the actual culprit was the Harrington rod. (The disk disease was simply a byproduct of the previousl spinal fusion, which had left a few lumbar vertebrae with the task of supporting essentially my entire spine; over the years these vertebrae had inevitably worn down under the stress. In fact, one or two of them had distintegrated completely.)
Now, seven years later, our membership is heading up toward 600. At least one or two newly diagnosed flatbackers seem to find their way to us each week. Many of us have now had our flatback corrected or improved via surgical revision and reconstruction. We have archived personal "war stories," medical information, and diverse resource materials and have built up an invaluable if informal "short list" of qualified spinal revision surgeons in North America and several European Union countries.
We have learned that many surgeons specializing in scoliosis correction have tried a few flatback revision procedures or would like to do so -- but only a handful have substantive experience and expertise in this area. The earliest revision surgeons, working in relative obscurity at a few far-flung teaching hospitals, began removing Harrington rods and correcting the devastation around the same time my second scoliosis surgeon was installing my own Harrington rod.
Revision surgery is extremely intricate and complex. I was very blessed to find two successive revision specialists-- orthopedist Frank Rand, MD, in Boston and neurosurgeon Stephen Ondra, MD, in Chicago -- who knew what they were doing. Between 2001 and 2004, I underwent six discrete surgeries totaling about 40 hours. These operations did not markedly improve my pain -- if anything, patients who need multiple spinal surgeries tend to have more pain over time -- but I now look relatively normal and am (I hope) at less risk of further complications from my flatback deformity.
All revision surgery carries an estimated 30 percent risk of major and minor complications. Many of us have been through fixable or reversible complications -- in my own case, severe antibiotic allergies requiring prolonged steroid treatment, spontaneous spinal fractures necessitating emergency intervention to save my spinal cord, and two episodes of post-anesthetic delirium after being under general anesthesia for 18-20 hours within the space of a week or so. Our group is still dealing with a load of shock and dismay since one member went into revision surgery last fall and came out of it paraplegic. Following many weeks of rehab, this feisty woman is now back home with her husband and two school-age children, adapting to life in a wheel chair.
All told, flatback syndrome has disabled an estimated 1 million patients who underwent "instrumented" fusions for scoliosis between 1960 and 1990. Most of us are on disability and have had our lives radically disrupted in almost every way.
But most of us also continue to have dreams and aspirations -- new ones now, perhaps: plans and hopes that may bear little resemblance to those with which we began, or those we actualized or initiated before the Flatback Debacle blew everything sky-high . . . After that happened, we ended up just hanging on for a while, just hoping to get through one more day. We found ourselves raking through the ashes, of that other life, unearthing a fragment or two of all that we held dear, holding a silent memorial within our minds . . .then grieving; then arguing, pleading, shaking a fist at the universe or the Higher Power of our choice . . . then hanging our heads in defeat (we couldn't exactly hold them up normally, at least pre-revision) . . .
And finally, tentatively, bumbling our way onward; choosing to live after all.
Opening ourselves, if only a smidgen, to some whole new destiny we had yet to create or discover.
Beginning again . . . . Becoming.
I can be changed by what happens to me.
I refuse to be reduced by it.
Maya Angelou
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