'cervical medullary syndrome' is a concept that has been drawn up by neurosurgeons dealing with CCI to describe and explain a symptom cluster that they frequently see in a subset of patients. It is - again, as I understand it - a concept that's in its infancy, having only been codified in the last 7 or 8 years, but it's drawn from their clinical experience and supported (or so I understand) by the published literature.
Thanks
@Stewart (sorry not Stuart),
It is useful to get your impression on the history.
The clinical picture of CCI has been around for 100 years. Every medical student is taught it. So it is interesting that neurosurgeons have been proposing a 'new syndrome' in the last 7-8 years. It is interesting and worrying because I think it is our old friend expectation bias coming in.
Why would neurosurgeons recently think they were seeing a new pattern of symptoms? I think much the most likely reason is because they are being referred people with that pattern of symptoms exactly because they have developed a reputation for being interested in that pattern. The 'syndrome' is self-fulfilling.
Maybe this is the place to add a b it of relevant history about 'EDS'.
At least in the UK until 1978 nobody was much interested in hypermobility. Then Rodney Grahame got interested. peter Rowe was also getting interested around that time or maybe a bit before. When we started the clinic at Guy's there was no symptom pattern recognised - we just collected people who were hypermobile. Then Rodney started talking about people with hypermobility having pain from it.
But how did he know that? The problem is that he only ever saw hyper mobile people referred to a rheumatology clinic. People are referred to a rheumatology clinic because they have pain.
Anyway, the story at that time was that the pain was due to the increased laxity in ligaments causing repeated low grade trauma. Rodney continued his hypermobility clinic for another forty years while I followed other things. Some time around 1990 the story changed. It seemed that people with hypermobility had pain all over - they seemed to have 'fibromyalgia'. They seemed to be hypersensitive to stimuli. It seemed that the pain could no longer be explained just buy the low grade trauma.
And the something else changed. Maybe around 2000 people started saying that people with hypermobility had chronic fatigue. Back in 1979 nobody had ever mentioned being fatigued. So why now? I am pretty sure because Rodney had gained a national reputation for seeing people with hypermobility and pain and more recently pain sensitivity and fibromyalgia and so he found his patients were fatigued - simply because those were the ones physios and doctors thought he was the expert for.
This continued to the extent that when Rodney retired those who had helped out in the clinic reported that, despite being a hyopermobility clinic, all the patients had the symptoms people lump under 'fibromyalgia'. In 1979 nobody had those symptoms.
I think Rodney may have held on to the 'hypermobility syndrome' term longer than some others but this group of patients are now often referred to as hypermobility type EDS or hEDS.
My strong impression is that the history of 'hEDS' is dominated by this circular self-reinforcing referral bias that creates whatever 'syndrome' the specialist says they are interested in. The promotional material I have seen on the net regarding CCI certainly looks that way.
So I think it highly likely that this new 'spinal medullary syndrome' is nothing more than the same self-reinforcing referral pattern. And it is not just that patients with these symptoms get referred. They see a physio who has heard of the syndrome and who encourages them to believe they have this syndrome so when they turn up at the neurosurgeons office they are another perfect case!
That might seem far fetched but, as I say, my experience with 'hEDS' in the UK is exactly that. When Rodney's clinic got overfull and the hospital admin insisted on the referrals being seen in a specified time the rest of us got a taste of his referrals. I got a few. They had been 'educated' by their physios to believe that they had pain due to hypermobility that required special management that only professor Grahame could provide.