After months of waiting and several phone calls to the appointments office my husband and I entered the outpatient department of the oldest Royal Orthopeadic Hospital in the UK to see, well I’ve nicknamed him Dr G, a musculo-skeletal specialist with a reputation for taking on apparently hopeless cases of chronic pain resulting from spinal degeneration. We followed the hospital assistant through a maze of antiquated corridors dating back to the days of Queen Victoria before being deposited at a small window where I gave my name and was, as traditional demands, asked to “take a seat”, words that can fill me with dread as I try to decide if I should explain the pain of sitting or just stand on my sticker adorned crutches and be mistaken for someone who is really impatient.
I stood on my crutches for as long as I could tolerate the pain flaring up as a result of the car journey (pre-car bed) and long walk through the hospital. As the pain took hold I sank into my “safe position”, which imitates a time trial rider’s aero position, first on my crutches and then on the floor with my shoulders lower than my hips. The nurse at the window was understandably concerned, not only for my welfare but also in case “other people were distressed” by the site of me. She meant well, so I didn’t take any offence as she gently guided me and my husband into a training room with a couch so I could lie down out of site of other sensitive souls.
Finally we were ushered into Dr G’s office. He had my file open on his desk including the Oswestry Disability Questionnaire I had completed that day. Dr G seemed so stern and aloof with no apparent interest in me that my heart sank. I bumbled on about how the condition affected me but he interjected with “I’ve read your medical history”.
Then he asked a very pertinent question:
“what do you hope to gain from coming to see me today?”.
My answer was simple, immediate and from the heart:
“I want a better quality of life”.
“I don’t expect a miracle cure just a better life”.
His attitude started to change. He asked me if I believed the pain still had a bio-mechanical source. Over the years I’ve read a great deal about “chronic lower back pain” (a slightly misleading catch all term) and discussed my condition with my new G.P. I had begun to understand the difference between acute pain and chronic pain. Acute pain indicates injury, e.g. a broken leg or a disc herniation compressing a nerve root. Chronic pain does not indicate injury. There are a number of hypotheses concerning how chronic pain develops, which I won’t cover in detail at this point, but the likeliest causes of my condition are: neuropathic pain caused by nerve damage and/ or over sensitised nerves, both originating from a bio-mechanical cause, e.g. spinal degeneration. Ultimately, chronic pain like mine is a result of a malfunction of the nervous system.
I explained I’d accepted that my pain no longer had a direct bio-mechanical cause, more importantly I did not want to continue having surgery if there was no long term benefit. I had asked my G.P. not to send me to another cutter. At this point I mentioned I was a keen cyclist and I had completed the six week Expert Patient Programme on-line some months earlier. This really cheered him up, he revealed he is a supporter of the E.P.P. and a cyclist. “That means you’re a goal setter” he half asked, half told me.
We discussed the futility of the traditional clinical approach to chronic back and leg pain, meaning more surgery, more drugs etc. I agreed with Dr G, saying not only had I read up on the subject of pain and the declining success rate of repeated surgical interventions but I’d also spoken to someone in that situation on the E.P.P. She had undergone microdiscectomy with hemi-laminectomy, tried epidurals (more effective for acute pain than chronic pain and there is a risk of infection) before opting for spinal fusion in a last desperate attempt to control the pain. Sadly she was having a terrible time recovering from the fusion and was in more pain than ever.
Dr G. admired my persistence with cycling and my determination to maintain as much fitness as I possibly could despite my physical and mental suffering, he felt it was something he could work with. My cycling was vindicated, some people close to me had questioned my actions, even suggesting I was making myself worse by riding my bike, but I knew it was not true.
He began to wrap up the consultation with: “You’re pain is real. You’re clearly disabled by pain”.
To hear a medical professional acknowledge my suffering in this succint way generated within me a kind of agonised relief, like removing a railing spike from an impaled arm or leg, you know it’s going to be the worst moment of your life, but you want rid of it. I was in a strange place emotionally for the rest of the day. Happy, drained, separated from myself, tearful, anxious, unburdened. Dr G. then explained he was recommending a course of therapy with the specially trained physiotherapist who worked with him.
The physiotherapy would not cure me of my pain, but it would hopefully help me to regain some control. I seized on this because despite my best efforts to focus on life the pain can become all consuming, adversely affecting my concentration, short term memory, motivation and mood. My first appointment with the physiotherapist would be over a month later, a few days after our return from France.