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Last August I had emergency surgery for a herniated disc impinging on my spinal cord. I now have Cauda Equina Syndrome and nerve damage causing numbness and weakness to my left leg, buttocks and foot, as well as some weakness and numbness to my right leg. I am lucky that my CES did not leave me with incontinence or sexual dysfunction, though I suffer from chronic back pain.
My recovery went pretty good at first. After two months at a local rehab centre and another month in their outpatient program, I still had the nerve damage symptoms, but I had graduated from a wheelchair to a walker to walking sticks and had even started cycling again. I had some occasional neck pain and my lower back was still a bit weak, but I was strong enough that my OT and physiotherapist began talking about a gradual return to work. I worked as an eco-friendly house cleaner with my partner. We used to work 25 hours a week, but it's hard work, so starting last October, I only went back for two hours a week at first. After three weeks I tried four hours of cleaning, then six hours. I was religiously doing my strengthening and stretching exercises, but at six hours of cleaning I was starting to feel some upper back pain. I tried eight hours the next week and by the end of that week my back was so sore I had to quit. That was early December and I haven't been able to work since then. I now have pain all over my back and three weeks ago my lower back seized up so bad I couldn't move. It's a bit better now, but still really sore and stiff.
I am on a long waiting list to get a CT scan and MRI (April!). My GP and both the physiotherapist and physiatrist at the rehab centre insist my back pain is unrelated to my CES. That seems absurd. I have never had back pain linger this long. It's so painful and it feels so fragile that one wrong move and it will seize up again. What is even worse, I'm not eligible for government disability support. Not even a friggin tax credit.
Does anyone else with CES suffer from chronic back pain? If you do, what did your doctor say about it. Helps to hear other people's stories. There is so little information out there about people living with CES.
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