Living with 'treated' Myelopathy
My wound healed well & left minimal scarring – you would be hard pressed to know that I had even had spinal surgery unless you know what you are looking for and look closely. I was reviewed regularly in clinic at 6 weeks, 3 months, 6 months, I year, 18 months and 2 years.
As I said before, the radiculopathy in my left arm was resolved & did not return. Unfortunately due to the damage to my spinal cord – which had been compressed for such a long time, I had been advised that the aim of surgery was to halt progression of paralysis. I was aware that I may never regain full function. Despite my neurosurgeons optimistic stance, I never did regain full function, so I continue to have problems with my gait, balance, dexterity and energy levels. I now walk with a stick for support.
I was discharged by both my neurosurgeon and neurologist in 2014 as nothing more medical or surgical wise could be done for me, with the advice to stay as active as possible & lose weight if I could, having put on weight as a consequence of my mobility levels deteriorating. The day I was told that I would not regain full function, even though I knew it and had been warned of such an outcome, was devastating to me. I cried all the way home.
However, before being discharged by the neurologist, I had reached such a low point in my life because I was struggling to come to terms with being permanently disabled. Everything was difficult due to pain, fatigue, altered balance and mobility and dexterity. Not only that, but I was trying to cope alone, thinking I “wasn’t disabled enough” to receive support, such as physiotherapy or occupational therapy. I even went back to work part time, thinking it would aid my recovery, but this time in a less physically demanding job. But I couldn’t manage as my residual gait and balance problems started to interfere with my ability to perform my duties.
With no support, I spiralled into a massive pit of reactive depression from which I felt I couldn’t escape. It was only the thought of, “What would happen to my children?” that kept me going. I asked for help and thankfully my neurologist referred me to a clinical psychologist for counselling, a physiotherapist for physiotherapy & also referred me back to my GP for psychological assessment & medication.
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I’m now 4 year and 4 months post-op. Psychologically, thanks to continued intervention, I am in a good place now. I find myself being more proactive in asking for help when I need it and accept it when offered. I am now an active member of the Myelopathy Support Community on Facebook and it has been of enormous comfort to me. I am no longer working, but have managed to successfully secure the disability benefits I am entitled to after a few years of trying.
Physically, although I do not regret having the operation in the first place, I have noticed a gradual deterioration in my symptoms, lately. I am having increased radiculopathy in my right arm now, upper back pain that interferes with my breathing and my mobility is starting to deteriorate due to increasing limb spasticity and neurogenic pain. Thankfully, at the time of writing, I am awaiting a referral back to the neurologist to check out these new symptoms. In the meantime, I plan to carry on regardless to the best of my ability.
One final note. I might not have the life I envisaged before becoming disabled with CSM, it is definitely a different road I’m travelling, but nonetheless, it is still a life worth living. I intend to live it.