Graham John Campbell, on coming to terms with his diagnosis of Forestier’s disease

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Forestier's disease, Diffuse idiopathic skeletal hyperostosis, DISH, true story, arthritis digest magazineI am reasonably fit and healthy but just over five years ago, when I was 49 years old, I began to have severe pins and needles in both hands, which was diagnosed as ulnar nerve compression (at the elbow). This was explained to me as idiopathic in origin and I was given surgery to release both nerves.

The operation(s) were partially successful; the release on my right arm seems to have worked well with no further issues or recurrence of the problem. But within a year I was back at my GP with the same symptoms in my left hand again. This time I was given a nerve release and transposition, along with a comment that there was a lot of scarring on the nerve and the bone had grown back “remarkably quickly”.

Everything seemed fine until late 2016. I had been having intermittent trouble swallowing (dysphagia) but like a true man put off going to see the GP (probably because both my father and father-in-law died of cancer of the oesophagus). Eventually I went to see my GP who referred me to an oncologist.

Extensive tests over three months showed I had no cancer and I was told that “the probable cause of the dysphagia is the large amount of bone bridging C3-C4 in your neck – it is an ‘old man’s’ disease called Forestier’s, I think”.

My GP was surprised with the diagnosis and has referred me to the local musculoskeletal service for assessment. I am now in an 18+ week non-urgent queue.

Aside from the now persistent dysphagia and morning stiffness, which I had put down to age, I hadn’t really thought about diffuse idiopathic skeletal hyperostosis (DISH) as a condition until recently. As part of my role at work I am one of the First Aiders. While on a course to renew my certificate, I was lying on the floor (waiting to be put into the recovery position) and discovered two disconcerting facts:
– Lying on my back (as flat as I can) the back of my head no longer touches the ground because of thoracic and cervical fusion;
– Getting up from that position requires the “turtle on its back” manoeuver (very undignified).
For the first time, I have registered that I do have damage to my spine.

What is Forestier’s disease?

Diffuse idiopathic skeletal hyperostosis (DISH), otherwise known as Forestier’s disease, is a relatively common disorder of the skeleton that is characterised by unusual new bone formation.

Ligaments, usually around the spine, become calcified and hard and other areas of the body can be affected to, where ligaments join to bone.

Many people have no symptoms and DISH is only noticed when X-rays are taken for another reason. X-rays show that the bones appear to have overgrown, a little like dripping candle wax down the spinal bones. Other people experience a stiff spine or back, but not necessarily back pain.

How common is it?

A recent study of men in Finland found that:

  • 40–49 years – 0.3% had DISH
  • 50–59 years – 2.7% had DISH
  • 60–69 years – 8.4% had DISH
  • 70 years or older – 11.2% had DISH

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