Hi neckdespair

Thanks for your posting. Up to 2 years ago, what you have described was my default situation ( the only exception being the nausea, but with the addition of frozen shoulder, 3 times each lasting 1 year. You'll want to avoid that one, so careful with any stretching above shoulder height or behind ). 2 years ago I developed numb hand, a classic symptom of compressed nerve, and that's when the physio's and neuro's jumped into action. Strangely, at the same time, some of the other (associated) symptoms calmed down, particularly the headaches which I always considered the worst symptom because of their overall effect on my resilience. This calming of the associated symptoms, with the arrival of the numb hand, made me think that all those associated symptoms, over 30 years, were more to do with percieved threats of nerve compression and subsequent neck reactions, rather than actual nerve compression, where the neck reactions were no longer required. You can see I like to theorise...nothing wrong with that if based on fact.
So, over 30 years I probably had much the same experiences as you, and my attitude was just as your's was. I used to get a disturbing gut feeling when leaving the GP or Physio, just thinking that this was going nowhere. Hopeless, empty, frustrated and getting angry internally would describe it best. Not a good recipe for controlling or organising my condition ! It's these experiences which forced me to re-think the whole C/S condition from square one, and try and spot the problem areas where patient's needs should come first, and which therapies should be discarded and which explored.
I also think that, despite my experiences, throwing the blame around is a bit pointless, no matter how satisfying it feels. It just helps to entrench current practices and opinions. What I would hope for is that more focus is directed towards the early experiences of long term C/S sufferers so that they can learn how to cope with many years of associated symptoms before the neurosurgeons take over. It seems that the vast majority of C/S cases are elderly and perhaps therapies have been developed to accommodate such cases. Whether the same therapies are appropriate to younger long termers is debatable. There are something like 200m cases of C/S worldwide. Maybe 5% of those are long term younger patients. So you can see where therapies might be directed, at the expense of the long termers.

You mention the lack of support groups etc. I think this is probably down to the demographics of the dispersal of the condition. Also, a lot of elderly patients are probably already in hospital, so the need for outside groups is probably seen as unneccessary. For the moment it looks like internet forums must fulfill this role.

Gerry