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A downward spiral

Shirley Widdop, A patient's story - Part 1  

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Hello there. My name is Shirley Widdop. I am 49 years old, a former nurse and Mum of three aged 20, 18 and 12. I live in West Yorkshire in the UK and I have had Cervical Spondylotic Myelopathy (CSM) since May 2011. I underwent a C6/C7 Anterior Cervical Discectomy with Fusion/Fixation (ACDF) in September 2012.
It all started in May 2011 when I was 44 years old. Up till that point I had been a reasonably fit and active person. In addition to my parenting role, I was working as a Home Help at the time, cleaning client’s homes. I was also studying part time for a BSC (Hons) Psychology degree with the Open University. 
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 Shirley Widdop is a nurse turned CSM patient turned CSM activist! She is helping to raise the profile of the condition and support others affected.  She writes a blog 'Myelopathy Matters' and is an active member and admin of the Myelopathy Support Group, a support group for patients, by patients. 

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MEDICAL FACT: The 'electric shock' sensation is a feature of spinal cord disease.  It is called Lhermitte's sign.  Read more here.
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One day, embarrassingly, I was sat on the loo and inadvertently yawned and stretched my arms above my head at the same time. As I did so, I heard something click in my neck. When I stood up to go and wash my hands, I was zapped by this intense, excruciating, electric-shock-type pain down my spine and I was instantaneously locked in a slightly stooped position. I couldn’t move for several seconds, but it felt so much longer. I was terrified. It was, quite frankly, one of the worst pains I had ever experienced. Once I was able to move again, I carried on getting ready for work and carried on with my day as normal.
A few days later, again as I was getting ready for work, I woke up with my left leg feeling numb from the buttock down and it felt like my leg wasn’t going to support me. Again, I was frightened, because I didn’t know what was happening to me. I immediately saw my GP, who performed a neurological examination, but by the time I reached the health centre, my symptoms had subsided. I carried on with my work-life routines as normal.

Subsequently, I started to notice tingling in my left hand – not too much at first, but the sensation was always there in the background. The sensations intensified and I started to feel numbness, pins and needles and intense itching that wouldn’t resolve. There were times where I would mindlessly scratch the palm of my hand so hard, it would glow bright red. When the discomfort became too much to bear, I returned to the GP, who, initially, adopted a wait and see stance.

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June 2011 arrived. I continued to have worsening of my symptoms. What started out as symptoms confined to my left hand progressed to shooting down my left forearm, then from my upper arm. The pain and discomfort felt like they were radiating from the middle of my left shoulder blade. My arm started to feel heavy, as if I was having a stroke. By now I was really, really worried, so as the end of June approached, I saw the GP again. They thought it might be Carpal Tunnel Syndrome, so they referred me to the local neurophysiology department for electromyography testing (EMG aka nerve conduction studies). The EMG test was painful to me – as painful as my initial electric-shock type symptoms. But one thing it did show is that I did not have Carpal Tunnel Syndrome.

The next step was referral to the neurologist at the local hospital. I received my appointment in October that year. The neurologist assessed me by testing my reflexes and conducting blood tests to check whether or not my symptoms were due to neurological disease like Multiple Sclerosis. I was referred for a Magnetic Resonance Imaging Scan (MRI) of my head and neck.
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Nerve conduction studies for Carpal Tunnel Syndrome
MEDICAL FACT: In one series of patients diagnosed with CSM, 46% had been initially, incorrectly diagnosed (and sometimes treated) with Carpal Tunnel Syndrome....
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​In the meantime, I tried to carry on with my life as normal, but I started to notice it was becoming more difficult. Silly things at first, like my hands feeling stiff and clumsy, trouble opening tins and packets and dropping things more often than usual. It progressed to having trouble walking up and down hills and climbing up and down stairs – it felt extraordinarily difficult, like I was walking through treacle or mud and it was really heavy going. I started to fall regularly, and had difficulty picking myself up from the floor. I started to feel old before my time and really, really worried. I was and am a lone parent – my children were 15, 13 and 7 at the time. I started feeling extremely anxious about being able to look after them and keep my job. I was frightened for the future.

Read Part 2
​
Read about the experience of other CSM patients

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  • What is CSM?
    • The CSM Documentary
    • Diagnosing CSM
    • The Science of CSM >
      • Disease Course
      • Degeneration of the Spine
      • Dysfunction of the Spinal Cord
  • Living with CSM
    • Physiotherapy for CSM
    • Surgery for CSM >
      • Who benefits from surgery? >
        • Glossary >
          • CSM Symptoms
          • Osteophyte
      • What to expect when you see a surgeon for CSM?
      • Types of operations
      • You have been scheduled for surgery? >
        • Before and after the operation
        • Post operative care
    • Patient Stories
    • Acute and Chronic Pain
    • Headaches
    • Dizzyness
  • Research
    • Assessment Scales
  • Support
    • Why join a support group
    • Disability Benefits / Advice UK
  • Blog
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