Cervical Spondylosis

[Neckdespair]

Hi neckdespair
Don't know what happened with my reply post (very unprofessional). Hope you can still read it.

Gerry

Thankyou Gerry for your post.
Here is my story:
In my first experiences of CS I was for years treated almost with contempt by doctors and neurologists and given useless treatment by physios who simply did not know what to do - a big hole in the textbook training.
When I have a flare-up, which as I say I have not until now had for a number of years, I have always had the same symptoms. I list them here and they seem to progress however much I try to control them. I don' necessarily have all these symptoms at the same time but they all add up to the same thing: being in a rotten state for months with no feeling of respite.
Dizziness
Double vision
Headaches(
Stiff neck
Hot feeling around neck vertebra
Pain in left shoulder
Shaky arms and legs
Searing pain radiating from neck
General feeling of 'flu-like malaise
Feeling sick, sometimes wanting to throw up
Felling that my head is holding up a ton weight
Hot and cold flushing
Prickling feeling up the side of my face and around my left eye
Tingling in left thumb and fingers
Palpitations
Inability to concentrate and feeling exhausted talking
On rare occasions falling over when turning my head

I have had about six of these experiences in the last thirty years, lasting from between four months to 14 months.
I know that these are the classic symptoms of my flares. No doctor can ever tell me they are not real.
What makes me angry is the fact that so many people out there are sent away with no support. One of the most difficult things to deal with is the complete feeling of despair. Friends desert you and family lose patience. In a bad flare normal life is wrecked and your social life is non- existent. It is easy to end up down the route of darkness and depression. Support is absolutely imperative.
I wish that someone in the medical profession would read this and feel passionate enough to shout about it.
Tap in cervical spondylosis and you will be taken to dozens of spinal surgery clinics. This is NOT what we want at all. I know. Iam a real sufferer with real experience.
There is practically no research done on this subject and the statistics leave out the thousands of mis-diagnosed sufferers whohave been labelled lingerers, hysterics and time-wasters like me. And get this straight, CS is not simply an 'age' thing, very many people experience their first symptoms in their 30's just as I did. I remain convinced that mine was the result of a bad caraccident in my 20's.
Before I stupidly decided to paint some shelves last week I had been fairly symptom free (it lurks!) for 8 years. On that occasion I had a superb physio who helped me to overcome most of my horrible symptoms in a three month period of weekly treatment. He was very familiar with the condition and knew exactly what was needed. This is of course my own personal experience and others may find different treatments that ease the symptoms.
I caution the use of physios, chiropractors and osteopaths who do not understand CS. More damage can be done with the wrong treatment and it is essential to find the right person.
The big question is WHERE? Why on earth is there not a support group or specialist centre for this frightening and debilitating condition?
This message should be red-flagged to every GP, neurologist and orthopaedic clinic in the country. NOW.

[gerry the neck]

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