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Patient Stories - Delphine Houlton

My Myelopathy

When did my CSM start?

I am not sure when I became aware that 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.

Delphine Houlten profile - Communications

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.

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.

Diagnosis and treatment

An MRI revealed 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. For others, my most problematic symptom was suddenly bowing low from the waist – I looked as if I was going to fall over.

After a 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. The following day I had had an ACDF as an emergency operation.

For the first few months I appeared to recover quite well but gradually the symptoms returned and worsened. Eventually bowing became almost constant when I stood up or started walking. After a week in my local hospital under observation I was transferred to London for second operation.

The first ACDF had not fused and there had been a 3mm movement. This time C6 and C7 were firmly fixed in place with a cage and plate.

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 – 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.

Managing my CSM challenges

I now work from home as a freelance when I am able as my legs are reluctant to walk far and sitting at a keyboard for any length of time causes problems. However, I can do most of the things I enjoy in life but just in much shorter stretches and at a slower pace than in the past.

Hydrotherapy helped me to regain a better sense of balance and gentle exercise classes once a week are also proving helpful.

It has taken some time but now I have got used to planning and pacing my activities, regularly changing the type of activity and taking frequent rests.

I have also learned than unexpected bad days are often a warning sign that a cold or other infection is on its way long before the first cough or sneeze.