By Maggie Victoria

There was never any counselling post scoliosis surgery in terms of career choices that would sustain me after my surgery for my life time i.e. do not take a job where you are sitting for prolonged periods of time, do not take a job where you are stressing your spine, with heavy lifting, or a job that is highly physical.

There was never any advice on what to do, and what not to do, physically to protect my spinal health after scoliosis surgery. I was told, go have your life, return to normal activities about 18 months after surgery. That is exactly what I did, as if that was the end of my scoliosis treatment forever.

There was no discussion with us about the long term outcomes of these scoliosis surgeries, and that some point in my life I because I was now forever surgically altered would in about 20 years become physically disabled, and that I would live in chronic pain, and my spine would degenerate, from loose instrumentation, from conditions such as degenerative disc disease, spondylitis, spondylolesthesis, facet joint arthropathy, bone spur formation, disk space narrowing, nerve issues, bi-lateral pars defect, and the list goes on. All of my complications, and degeneration, still as I write this article, largely unexplained to me or even acknowledged. However, I am very aware of the degeneration and how dare they try to keep it from me!

Life after Scoliosis surgery, long term has left me fending for myself, looking for any pain relief that I can tolerate, which includes daily doses of NSAIDS, narcotic medications, and muscle relaxants. All of these of course are legal and script medications.

I pay for any health care that I get now, with weekly physiotherapy. I have “tired” at the suggestion of a surgeon massage therapy. I thought, are you kidding me, you have altered the very dynamics of my body, by brute force, alterations, with rods, fusions, and hooks and you think that message therapy is going to relieve my symptoms. I am tired of the ole, “try this and try that” in my life after scoliosis surgery. I feel that I am alone, that I am struggling, physically every day, to hold on to the career I so desperately love. I wonder, long term, how much more I can overcome in terms on the chronic pain, so I can hang on to my career. Losing my career, that I am darn good at, in my life after scoliosis surgery, will be yet another blow to my spirit and my ability to live my lifestyle and provide the very best for my family. Something that I take great pride in is my children who are amazing children, and live in constant fear that I someday will not be able to support them. My breathing is compromised and I have pleural hardening on both my lungs. I had a lung collapse in my last surgery and was awake when I was intubated.  I start laughing and breath too deep and nearly choke to death at times, with my children watching. This hurts me to the core of my being. Life after Scoliosis surgery, the promise of a wonderful quality of life, the promise, of a full and healthy life, without pain, cosmetically not much improved, in fact, obviously still deformed,  to me, now 20 years after my last surgery is the greatest betrayal to me as a human being and who is accountable for such a betrayal. The promise of the good life, well, it never happened.

Moving forward in my life after Scoliosis Surgery

I live in chronic pain and it is severe. I have ended up in emergency with muscle spasm so severe I was wishing and praying to God to let me die. I wait for hours I get ICE and then injected with tramadol, and Percocet. I respond by falling off to sleep and then I am escorted out in a wheel chair and sent home.

I have seen several “revision/salvage” scoliosis surgeons. I had one surgeon tell me, quite honestly, that he could not deal with me. I have had 3 surgeries and he was not qualified to deal with me but he would be happy to refer me to another surgeon. He offered to monitor me, for follow-up but that was the extent of what he could do for me. He was very kind, and his honesty was appreciated.

Surgeon number 2, I waited for months, I dealt with him not a resident, however, the appointment, largely a waste of time. He referred me back to physiotherapy to build core and the muscle I had spent, the last two years trying to build. Of course, this was the impossible task, he knew as well as I, that my muscles had gone into atrophy, and building them was nothing short of impossible. Every time my physiotherapist isolated those muscles with some sort of exercise, severe spasm and pain resulted.  Pain levels I never thought even possible were becoming my reality after scoliosis surgery.

Months passed, and then a year passed. I asked for a referral to yet another surgeon. Again, I dealt with the surgeon, who was rather polite, however, rather dismissive, and he felt there was nothing surgically he could do to improve my condition. Leaving his office I felt completely defeated, deflated and confused. Was this now my new reality? Was this how my life was going to be now, after my scoliosis surgery long term? Who could help me with my new reality and my new life after scoliosis surgery? I began to feel helpless and I felt trapped with no way out.

Just recently, I was seen by yet another salvage surgeon. Here is my experience. I waited for nearly a year, to get a consult with this surgeon. I waited for what seemed like hours to see this surgeon. To my surprise, after waiting for hours, I was not graced with his presence, but rather his surgical resident, who did not even introduce himself as a surgical resident. I was being assessed and evaluated by a professional who was not even yet a trained and qualified salvage surgeon. By the way, these scoliosis salvage surgeons, are more highly trained, and qualified much more then the initial scoliosis surgeons from childhood. These are now the most dangerous and most complex surgeries in the world, as the work that was done, so many years ago, must be undone, and the fusions broken, the spine reset, new instrumentation placed, and we are not 15 year olds any more. We are now mature ladies, from our 30’s to upwards of 80 years old. Our bone mass, is old, damaged, and our muscle tissue, in atrophy, and our ability to heal compromised by our age. Patients by the time they arrive in these surgeons office are depressed and feel hopeless and helpless. The surgical resident offered me, two surgeries, one on my C-spine, and one on my L-spine. There was no discussion about the rods, they are loose at the rod endings, and the pain when they shift, even marginally, is something no human being should ever have to experience. There is no pain management that will help with this sort of pain because the source of the pain is an unnatural pain, i.e. the metal in the body, and the fused spine. How can any pain management help and respond as a normal body would when we are now far from the body we were created with; well, of course it doesn’t. The surgeon finally graced me with his presence, after about 5 minutes, decided I need nerve block injections, I needed the cracks in my vertebrae sealed, and I needed further assessment to determine what surgery would be necessary. I was asked what pain was worse, what would I like surgically treated first, my c-spine or my l-spine. I thought what? The rods are driving me insane, they need to come out? I left the appointment yet, again, confused, and disheartened, knowing that I would be yet again entering into 2 more surgeries, with the outcomes unknown and perhaps would do nothing to address the pain levels I am having. These are the people I am supposed to trust to do one of the most complicated surgeries in the world, no thank you.

Months have passed now, since my last appointment. I am on a six month waiting list for nerve block medication to be injected into my vertebrae. This will do nothing to address the pain, it will mask it, and I will be unaware of it. I have decided, I will decline the nerve block, I think this is nothing short of dangerous and there are no guarantees that it will work. I am tired, of being a “lab rat” and the try this and try that, when the community at large is well aware that there is little they can do for me now however there is no one telling the truth.

I have done my research, I have found that these scoliosis surgeries are highly complex, that they alter the very biomechanics of the human body, that I have traded a mobile, flexible spine, for a fused solid mass without mobility, without flexibility and introduced metal to my body, that is loose now, that is causing me severe pain, that is likely corroded and causing an autoimmune response in my body. I have learned that my experience is not uncommon, that there are many patients who have undergone these surgeries, who live as I do in chronic pain, without a place to turn for help, or any sense of peace from the daily debilitating pain that destroys the mind body and spirit.

To try to tell your story, to the scoliosis community, starts at nothing short of a personal attack on the individual. We are met with suspicion, with hostility, and we are blamed for being negative, even when we try to tell our stories without emotion. We are censored, we are blocked, and we are told that the new scoliosis surgical procedures are so much more different than those of the past and they are doing great. The denial of our stories and our right to speak is nothing short of sad. Somehow because our scoliosis surgery was done in the past that the “new scoliosis surgical outcomes” will be so much different than ours and the ole, it won’t happen to me, attitude sets in. There are few studies on us as a community long term and how we fail to thrive or thrive long term. New surgical approaches are no different, and there are no studies available to support that the new surgical approach will allow the patient to thrive long term either. It is still scoliosis surgery, it is still spinal fusion, and it is still metal and now pedicle screws in the spine, and it seems to me that the instrumentation is even far more invasive than the original surgeries.

There is ignorance, and complete disregard for the strides we as a community have made in the non-surgical treatment of scoliosis. The resistance is completely unfounded and without an ounce of research on their part and the personal attacks begin.

I know that soon I will be unable to hang on to my career, that the degeneration will not stop, and soon I will be begging my government bodies, for disability benefit, that won’t even cover my property taxes. I know that my life will forever change and my quality of life will suffer because of the loss of my career and my lively hood. I have yet to come to terms with that. I am young to not contribute to my industry but that now will soon be taken away from me. What is to become of me? What has the orthopedic community have to say to me, and so many others like me; the ole “stay positive” and the nonsense that my attitude is everything etc. Where do I go from here? 

There are forums online for people with post scoliosis surgery flatback syndrome. Many of these groups, censor one’s emotions, as if we have no right to feel angry, we have no right to mourn the loss of our livelihood, our quality of life, we are just supposed to have these surgeries, sometimes more than one, stay positive and not that this is just another battle with the beast of scoliosis. I BEG to differ. This has nothing to do with our next battle with the disease of scoliosis. These are long term complications, from the initial surgeries, or what I deem as failed scoliosis surgery. I do not worship the orthopedic community, I understand there are limits to what they can do, but I will not accept responsibility for the outcomes of these surgeries as my next battle with scoliosis.