My experience
At the age of 13, I was experiencing upper back pain, and I would find relief if I bent forward letting a small hump to form at the right side of my spine. I was training in gymnastics during that time, after having been involved in sports like tennis, and athletics for the previous couple of years. I was active, and athletic, and I knew clearly that my life career would involve sports and movement training. The family doctor who examined me, referred me immediately to the orthopeadic. I was diagnosed with a severe structural right thoracic scoliosis of 45 degrees with a compensating left lumbar curve.
A procedural approach of wearing a brace until my growth would complete, and then 'commonly' be operated was offered. According to the consultant, any type of exercise (apart from swimming) was to be given up, and of course any career in sports was out of the question. Being considerably tall for my age, it was even suggested that further investigation was carried out to exclude the possibility of gigantism or some other serious endocrinal abnormality (!!!). The doctor clipped my wings ... my whole life collapsed within few minutes. On my way out of the consultation room, I bursted into tears, something that would happen every time I was trying to find the explanations the doctor never bothered to give me. My first hot mediterranean summer braced in a corset was uneasy, sweaty, with many movement restrictions, and increasing consciousness regarding my appearance and posture. A few months later, I started playing volleyball and returned to regular exercise, despite the doctor's opposing advice. The years that followed, I visited one more orthopeadic, and I was treated with observation, bracing and specific exercise. My scoliosis kept progressing along with my growth. My body was changing, however the doctors kept me with the same corset, which was occasionally patched or adjusted in an effort to enhance freedom of movement yet to push my bones back to normal shape and position. I would get bruises and marks at my hip crease and under the shoulder, but no 'specialist' ever thought that my ever growing and changing body had outgrown the brace designed for me a few years ago. The psychological impact was as big as the physical, however even greatly underestimated. Gradually, I stopped wearing the brace, but kept exercising and keeping fit. I found that movement and keeping active was the best way to stay pain-free and to reduce tension.
Efforts to find solutions other than surgery, led me to Katharina Shrott clinic, which I visited 3 times within two years. Their technique is based on teaching conscious spinal realignment through corrective pelvis alignment, breathing, and muscle strengthening among others. The key word here is that of conciousness. The moment I allowed myself to forget about the deformity, I was easily slipping back to old habits. It also meant that unless I was practicing several hours a day (doing very specific exercises that have nothing to do with what my normal volleyball training involved) I would return back to point zero. Of course it took me years to see (and accept) that this would be the case whatever the chosen method of treatment was undertaken. Yes post-operatively too, back/spine focused exercise has been imperative and it will always be for the rest of my life.
At the age of 23, I finally agreed to the operation on the grounds of improved appearance and pain prevention. After a 7 hours operation, I came out of the surgery theatre with two rods inserteed along my spine, fusing 12 vertebrae from T4 to L4. Latest X-rays of my spine can be seen here. I was in extreme pain for the first days, and as both the spine and the nerves that come out of it had been severed, I had increased pain sensitivity (even a light touch at sites distant to the spine, e.g. forearm, was enough to make me jump with pain). I asked to, and was released from the hospital the earliest possible (7 days after the surgery happened), and it was suggested that I visited the physician to get a new brace made. I would have to wear this for the following 6 months whenever and for as long as I was out of my bed. The first five weeks after the operation were full of pain, sleepless and bothersome due to an operation room-acquired bug. The infected wound meant that I had to pay the hospital regular visits to get the infection resolved. Recovery has been difficult and long, but ultimately successful.
I now know that a fused spine is not a cured spine. Fluctuating aches and tensions along my neck, shoulders, spine and other parts of my body are the norm. These are managed through regular exercise, heat, stretching, and of course rest. Pilates exercise on the equipment has been remarkably helpful. I jump on the Pilates Reformer for at least few minutes every day to bring balance between left and right, and the front and the back of my body. I have become a certified Pilates instructor, because I am passionate about passing the method on to other people with spinal deformities. This has become my mission. My scoliosis has at times knocked me sideways and grinded down my spirits. It took effort to put my pieces together, accept both my body's limitations and charismas, and feel reasonably knowledgeable about scoliosis and the problems that might arise from it. Living with scoliosis carries its own unique rewards. But finding them takes thought, care and effort. My biggest reward has been the conscious choice of putting my scoliosis in the centre and designing my life around it. I stepped out from a career in Information Technology to become a massage therapist, and fitness/health instructor. My work is now purposeful and pleasurable. The path is not always full of roses. But it would have been incredibly boring if it was.
Email me: info@changestasis.com
