Research is increasingly demonstrating the importance of early diagnosis, and treatment as appropriate, of CSM and CDM.
I am sharing my journey to show how easy it is to ignore early symptoms and how difficult it can also be for doctors and other clinicians to suspect this condition as a diagnosis.
Hopefully increasing awareness of the condition, and the differences in outcomes as a result of early diagnosis, will encourage more people to raise the possibility of CSM/CDM with their GP - and more GPs to consider this diagnosis for further investigation.
I am not sure when I became aware I was having problems. It could have been on a university field trip in the early 1990’s when, memorably and embarrassingly in front of generally younger students, my hands and feet would not co-ordinate to put my boots on and zip them up. But I have always been a bit clumsy.
Alternatively, it could have been when I put my posh high heels on for a business meeting only to discover I physically could not walk across the car park and had to go bare foot – not really in keeping with my smart suit.
Over the following years there were the various visits to the GP for a variety of complaints - shoulder pain (sent to physiotherapy), fingers and thumbs locking (not uncommon, no great concern) – plus self-help ranging from regular massages, gym routines, acupuncture, limiting time behind the wheel of the car and constantly rearranging my desk, chair and computer combo in the office.
It was the GP who finally referred me to a neurologist. I had turned up at the surgery with more shoulder pain and reported that parts of the right side of my body had suddenly gone numb and showed no signs of coming back to life.
A physical examination revealed over-exaggerated reflex reactions on my feet and knees plus poor muscle strength in my left leg. That led to an MRI and a referral to Kings College Hospital, London. There was narrowing in the neck, compressing the spinal cord, at C6 and C7.
An operation was recommended but the waiting list was long. As I waited the shoulder pain increased, locked hands left me standing in supermarkets holding my purse at a funny angle and trying to explain that I would be able to pay in a minute or two when the spasms passed.
I always try to be polite – but maybe in 21st century Britain bowing is a bit over the top. As I got clumsier and had more difficulty walking any distance, I regularly started bowing deeply from the waist. It was clearly quite disconcerting for other people who were expecting me to fall over. I just had to explain it was normal for me. There were lots of triggers for bowing – tiredness, stress, uneven pavements and standing still in one place too long to mention a few.
Then, in 2007, there was the afternoon in the office, after a lunch time visit to an osteopath because the shoulder pain was becoming unbearable, I started jolting from end to end. It was as if I was having huge electric shocks. I stood up, sat down, walked about but the jolting continued.
Diazepam from the GP failed to stop the jolts when I was awake – but my husband said they stopped when I fell asleep. The next day I was admitted to Kings College Hospital and had an ACDF as an emergency operation.
For the first few months I appeared to recover quite well – no more bowing, fingers rarely locking, still numb on the right-hand side of the body and a bit clumsy but all seemed good with the promise of more improvements to come.
However only too soon I was bowing intermittently again, fingers and toes were locking, walking was increasingly hard with rigid thighs and numb toes. Furthermore, incontinence started to become a problem. I was referred back to Kings College Hospital. While I waited for an appointment with the neurosurgeon, I was sent for tests to check my breathing and an investigation for carpal tunnel syndrome.
Then the bowing became almost constant when I stood up or started walking. I was taken into my local hospital for observation while they tried to arrange a transfer to Kings College Hospital. After a week, I was admitted to Kings and swiftly operated on.
Apparently the first ACDF had not fused and there had been a 3mm movement – presumably squashing the spinal cord further. This time, 2008, C6 and C7 were firmly fixed in place with a cage and plate.
Returning to hospital for the post-op appointment, I took off my collar for an X-ray and was asked to hold two fairly heavy containers of water – one in each hand – to help put my posture in the right position. I achieved this but within minutes I started bowing again.
I have taken Baclofen for the past eight years to try and relieve the excessive muscle tone causing the rigid legs but keep the dose as low as possible as they make me too sleepy. I tried Tizanidine but my blood pressure just fell through the floor. So far, I have used over-the-counter medicines to counter the pains in my arms, shoulder and legs.
I found a private physiotherapist who helped me strengthen my core muscles and taught me how to focus constantly on different aspects of walking – placing the feet; moving the legs; positioning the hips; holding the core; positioning the shoulders, neck and head… A process involving a lot of mental processing and totally exhausting – but it does mean I bow much less often!
Gradually, despite my best efforts, the general disabilities started increasing. Mobility continued to be the key problem making working as a full-time, agency-based PR consultant impossible.
I dropped to three days a week then, in 2014, I went freelance. Now I work from home keeping meetings to a minimum and not taking on work that requires attending events and running around. Working from home on the computer means it is easier to pace my work to match the type of day I am experiencing. However, it severely limits the range of PR work I can take on.
Keeping the house reasonable is a major challenge even with weekly cleaners. Socialising is not easy and I have swapped knitting for crochet as it is easier to manage with clumsy hands.
On bad days, getting washed and dressed can be mentally and physically draining and incontinence is always a potential embarrassment. I generally use one walking stick but have recently found two more effective.
Probably most upsetting is not being able to do all the things I would like to be doing with my young grandchildren – from fun outings and changing nappies to doing up tiny buttons.
Fortunately, I have an incredibly supportive family but it is a strain and worry for everyone. Not least because we don’t know what the future holds.
My neurologist says that my Myelopathy was probably caused by general wear and tear on the vertebrae in my neck plus being born with a narrow spinal cord at C6/C7. While those vertebrae are now securely in place, there is damage to the spinal cord in that area – myelomalacia – and that is progressive. Degeneration will continue but no-one knows the timescales involved or the degree of disability this will entail in my lifetime.
•Finding Myelopathy Support on Facebook and Myelopathy.org has been an incredible experience and a tremendous relief.
I am now so pleased we are reaching even more people as a Cervical Myelopathy community on HealthUnlocked.com
These resources have offered me the first opportunities to liaise with other people with Myelopathy and share experiences and information.
Myelopathy.org is a fantastic resource with all the information I so needed, and could not find, in the past – clear explanations of what is causing the condition and even more importantly the latest research being undertaken worldwide and the growing knowledge base.
Now my aims are to spread awareness and understanding of this condition among health professionals and potential sufferers so that the condition is more readily identified and treated, and to help raise funds for further research.
