This month we’re taking a departure from our usual Q&A-style format.
We’d like you to meet Karen Johnson, the newest member of the Support Group admin team. Karen’s story adds to the diversity of experiences within our community and the strength found in sharing them.
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Hi I’m Karen, the newest member of the Support Group admin team at Mylepathy.org.
My duties mainly are the admissions of new members to the Support Group, keeping an eye on and ensuring the day-to-day posts stay within our rules and, like all of us, to be as helpful as possible to our growing number of members.
I’m very much a support function to the existing admin team of Iwan, Sheila, Esther, Kevin and Tammy, all of whom do so much behind the scenes from Virtual Coffee Breaks to Podcasts, member one-to-one support, and idea generating. We all volunteer our time and are either patients or carers for a patient.
Like many of our members, I had no idea what myelopathy was before I was eventually diagnosed. I was very fit and active for years but thought I was just one of those extremely clumsy people. I was always falling either up or down stairs, tripping over my own feet, and constantly putting up with jibes from friends to “take more water with it” as I frequently appeared drunk even though I wasn’t (well, not always!!).
In February 2008, one of these frequent falls down some stairs really hurt my lower back and I consulted a GP here in the UK. The GP asked the very simple question “why are you always falling?” but accepted my “just clumsy I guess” answer and referred me for physiotherapy on my back, the standard start point for MSK pain in the UK. Three months and several sessions later, my excellent physiotherapist wasn’t happy at all with how my neck moved (or rather didn’t). Confused, I reminded her I’d visited her for my lower back. Ignoring me, she sent me back to the GP with a request for them to refer me to a consultant orthopaedic surgeon.
At my first visit, having gathered some basic details, the surgeon did a basic reflex test and I chatted with him that my reflexes have always been described as ‘good and strong’ by medical professionals. Frowning, he made me stand and conducted what I now know to be neurological tests: Romberg’s, Hoffman’s, and gait. When he finished, he sat my husband and me down and calmly told us something was very, very wrong in my central nervous system. My ‘strong reflexes’ he explained were actually abnormal hyperreflexia and should have been picked up long before. All the neurological tests he had just performed had indicated a serious underlying issue. He ordered an urgent full-spine MRI and within a week I was back with him as he explained my life was about to change forever.
My hurt lower back from the February fall was actually a retrolistheses. I’d knocked my vertebrae off at L5/S1 and it would have to be reattached, which is bad enough. But worse, I had such severe compression at C5/C6 that I needed urgent neurosurgery or I could be paralysed from the neck down by even the smallest knock. The cause, he said, had to have been major trauma at some point in my life and we pinpointed a car crash I’d had in my twenties (pre MRI days) as one potential cause.
In 2008, I had my first anterior cervical discectomy and fusion (ACDF). Two more have followed from adjacent segment disease and cage failure, plus two separate four-hour operations to stabilise my lower spine. I did well for many years, carrying on working full- time and undertaking physiotherapy and a spinal rehabilitation course; however, in 2016 I had to admit defeat as the pain and condition of my spine had deteriorated badly. My long commute and intensely stressful job were not helping and I was medically retired from the job I absolutely loved. I was 49.
Under the excellent pain management team at Addenbrooke’s, I have since had a high frequency spinal cord stimulator fitted to help manage the ongoing nerve pain, which has been fantastic.
I have great support from family and friends and, with children living all over the world and five dogs, my life remains pretty busy and interesting. Just different.