Jenny Rolleston

Diagnosis: Transverse Myelitis

Melbourne, Australia

Early March 2014 looms large in my memory. I had just been diagnosed with aggressive breast cancer and while undergoing a CT and Bone scan using iodine contrast, I began to experience a tingling sensation in my right leg. The sensation continued, becoming progressively worse and more extensive to the point that within a few hours I was unable to walk properly. I immediately sought medical attention at the general practitioner who believed I had a reaction to the iodine contrast and gave me a cortisone injection and said it may take a few hours to resolve.

It didn’t, and by that evening I was paralysed and in pain from the waist down in my right leg and from the mid-thigh down in the left. At that point I was desperate and went to the local hospital Emergency Department. I had to be wheel-chaired in.

At that stage, I still assumed it was a severe reaction to the iodine, and I suspect on that basis my condition was deemed by the triage nurse as non-urgent and non-life-threatening. I now know that my condition was anything but non-urgent and while my life was not in the balance, my quality of life and life as I knew it was threatened by the delay I experienced that night. I was not seen by a doctor for seven hours.

After admission, it took five days for a diagnosis to be made during which time my paralysis, altered sensation and pain got much worse. The diagnosis was achieved by a process of elimination of other causes. Transverse Myelitis (T7-9) was the last man standing. I was assured then and still am by the neurologists that iodine contrast is not a documented cause of TM, and hence the onset of the spinal inflammation and the administering of the contrast have been deemed coincidental. I’m still not convinced, and I will be rejecting any attempt to use it should such tests be needed in the future.

Once the diagnosis was made, I was prescribed high-dose IV methylprednisolone for five days and over that time the symptoms improved a little, but I was still unable to walk unaided, and the pain persisted.

Intensive physical rehabilitation was commenced in a rehab hospital, and I have continued with my rehabilitation under the guidance of a neurological physiotherapist and later with a physical therapist. I have been disciplined with my exercise regime and I have found stretching very beneficial. Tai chi has also helped both with the restoration of some balance and a strong meditative component. Now, nearly four years later I have quite good functionality in my legs, although the muscles have wasted a little. I walk unaided around the house and in known environments and use a walking stick when needed out of the house. So, I am very pleased with the physical recovery.

Unfortunately, the neuropathic pain has persisted despite medications for these symptoms. Living with chronic pain is indeed a challenge. It has been and continues to be the biggest challenge for me. It means I cannot walk long distances and suffer from fatigue often and easily. Some days are better than others and I am certainly in a better place now than I was a year ago or two years ago. So, this gives me heart. I don’t think the pain has improved much, if at all, but my attitude to it has definitely changed and I am less inclined to fits of depression, anxiety or anger. I have moved slowly but surely through the stages of grief and feel that reaching a stage of final “Acceptance” is possible, although I’m not there yet. I know I must continue to strive for this as a way forward. The journey continues.

Jenny Rolleston