Denied By AETNA

My struggle with scoliosis began at the age of 13, when I discovered that I had a condition that causes the spine to curve as it grows. I grew 7 inches in one year, and doctors attributed that to what was dubbed “idiopathic scoliosis”, meaning that it was of unknown origin.

Shortly afterwards, when I was in the 8^th grade, I was fitted for a Milwaukee Brace to help contain my curving spine. The brace was a medieval-looking device, with a two-inch metal bar that ran the length of my torso and attached to a padded shelf which rested underneath my chin. The back of the brace had two metal bars which were supposed to keep my back straight.

The brace did nothing to reduce or stop my spine from curving, and after wearing the mortifying contraption for a year, I stopped wearing it and continued on with my life.

After college, and as I entered the workforce, it became even more apparent that my spine was worsening. I would come home from work, crying in pain, and not knowing what to do. Chiropractors could not fix the problem, no one knew how to help.

As luck would have it, I began a job at The Hospital for Special Surgery in NYC, which at the time was the premier hospital for orthopedic surgery. People came from all over the world to have the opportunity to have the best orthopedic surgeons correct serious conditions.

Working there as the PR Director gave me the opportunity to learn all about my condition, and I discovered that there was hope. At the age of 28,  I had surgery to correct my scoliosis by a surgeon who was considered to be one of the top scoliosis doctors at the time. By then, my upper curve was 95 degrees, a far cry when I was first diagnosed with a 30 degree curve.

After surgery, my doctor informed me that it had been too risky to operate on the lumbar, or lower spine, but did as much as he could, which was to achieve a 23 degree correction in my thoracic or upper spine, in which he attached what was known as a “Harrington rod” to keep the spine stable.

Even though I wore a body cast for six months, I looked forward to the future. Besides relieving me of unspeakable pain, I had a new lease on life as a single woman who did not feel compelled to hide her deformity anymore. I could be like everybody else.

In the seven to eight years following surgery, I lived my life and I tried to forget I ever had scoliosis. But as I neared the end of my thirties, it became apparent that my spine was continuing to worsen. I married and had two children, and after my second son was born, had to undergo long periods of physical therapy so that I would be able to sustain the long periods of crippling pain.

In fact, repeated physical therapy over many years left me wondering – was there anything I could do? The surgeon who took over my retired surgeon’s practice could not offer me hope, as the surgical techniques at the time had not yet progressed to where they are today.

As my spine continued to worsen over the next two decades, repeated periods of physical therapy appeared to offer no long-term solution. Weeks or even days after the therapy, the pain would just continue.  I found some comfort in deep tissue massage therapy, which the insurance company did not cover, but this continued to provide only a short-term fix.

In 2022,  I began to research scoliosis surgeons in my area.  I found one with a stellar reputation.  His patients claimed that he had performed what some claimed was “a miracle,” eliminating years of pain and giving them hope for the future.

When I visited the scoliosis surgeon’s office his reaction was immediate.  He explained that my spine was worsening and that there would be no future without continuous back pain if I did not have surgery.  Unlike years ago, when the surgery was in its infancy, he felt confident that by operating anteriorly and posteriorly, he would be able to arrest both upper and lower curves and best of all, eliminate the pain.

I was ecstatic. But because my pain was so troublesome, I asked for the names of physical therapists so that I could do that,  (once again) as I was considering having this intense surgery.

To my surprise, most of the physical therapists I called told me that they did not have anyone on staff who treated patients with severe scoliosis. Physical therapy will not straighten a spine, and so having success at eliminating pain was dubious at best. Finally, I spoke with a therapist who said she could treat me.

Towards the end of the second week of therapy, the therapist attempted to get me to position myself over a hard foam roller. I explained that I could not do this due to my severe curve. She did not believe me and forced me to continue an exercise. This resulted in excruciating pain, and for the next four weeks, I was in pain and unable to even sleep through the night due to the therapy injury. It was clear to me then,  after this PT experience, that my only option was surgery, and I began the process of preparing myself for this difficult but potentially life-changing surgery.

I lost weight. I exercised. I made sure that I was in the best shape possible to help achieve a successful result. My husband continued paying for the top Aetna plan through work, (over $3000 in premiums monthly from his and his company’s contribution!!).  After almost four decades of suffering, I felt sure that today’s technology coupled with the hands of a gifted surgeon would finally give me the opportunity to find relief.

It had been a long journey.

The hospital date was set. The tests were all completed. I said goodbye to all my colleagues because of my expected long recuperation from this difficult but necessary operation. I prayed that I could withstand the pain and just tried to focus on the positive outcome.

And then, five days before surgery, an Aetna gynecologist said, “denied.”