Cervical Spondylosis

[gerry the neck]

Hi Neckdespair<br><br>Firstly, thanks for your comments. Appreciated.&nbsp; As it happens I'm located Tottenham area, so not too far away from the Royal Free catchment area.&nbsp; You ask about a specific treatment centre,&nbsp; but I'm afraid I haven't found one as such.&nbsp; What happened to me 18 months ago,&nbsp; I was referred to an NHS Physio on Lordship Lane, who spotted the problem and fast tracked me through MRI scan and tests, at St Ann's Hospital,&nbsp; so that I was eventually referred to UCLH, Queens Square, London.&nbsp; Some more tests there (MRI and EMG) and they concluded exactly where the main problem was (5th and 6th), but with further degeneration from 3rd to 7th.&nbsp; They are really only concerned with whether they should operate or not, considering the risks, or whether I think I can manage without surgery.&nbsp; They don't really get involved in advising management techniques...that's for the Physios.&nbsp; I'm sceptical about the risk factors and have chosen to avoid surgery, and they've agreed to monitor the situation on a yearly basis. I've also got an open appointment which means I can skip all the usual preliminaries and go straight to the hospital if things suddenly get worse.&nbsp; I'm relatively happy with this outcome and that's what I meant by being treated well recently.&nbsp; <br>On the daily management front I remain just as disappointed as you.&nbsp; What you described is so true for all C/S patients,&nbsp; to the point where I think the professionals simply have no conception of all the side issues we must deal with.&nbsp; Perhaps the confusion of symptoms undermines their usual approach to injuries and , as such , they find it difficult to determine cause and effect for each symptom, and developing physical therapies without this knowledge is pointless.&nbsp; I've always found the recommended therapies distracting, rather than remedial.&nbsp; And there are times when I feel the exercises they recommend are more risky than doing nothing !&nbsp; Why would we, as patients, want to risk further aggravation....it doesn't make sense.&nbsp; I trust the ( already overworked ) neck to attempt to do it's best to rectify any threats or flare ups,&nbsp; and any interferance in that process had better been proven without doubt to be beneficial. Otherwise,&nbsp; hands off please.<br><br>In the last 2 years I've put my 'thinking powers' into trying to evaluate the separate symptoms individually, and have tried to come up with some advise for dealing with each,&nbsp; in an attempt to minimalise the most painful symptoms and thus create an environment where recovery from flare-ups is quicker, more comfortable and less likely to aggravate further.&nbsp; To me,&nbsp; this is probably as good as it gets,&nbsp; without opting for risky physio or surgery. Through a bit of trial and error / success I've come to some conclusions about how to best treat the C/S condition.&nbsp; It seems to me that the manner and environment in which we sleep, or nap, is all important in determining the intensity of the symptoms when we wake, and which remain unchangeable until we next sleep or nap.&nbsp; For instance,&nbsp; last week I had a flare up ( after trying to disassemble a sink unit from underneath ). The next morning I could hardly move, quite rare these days as I've learned to avoid this type of aggro.&nbsp; That night I again slept in bed, and the next morning it seemed worse.&nbsp; However,&nbsp; in the afternoon I took a 1 hour nap on my sofa,&nbsp; in an upright position, with my head resting in hand,&nbsp; and when I woke there was no pain,&nbsp; which lasted for the rest of the day.&nbsp; Slept in bed again that night and the pain returned in the morning.&nbsp; I'm aware that it can be difficult to organise sleeping arrangements when in the middle of a flare up, because we're usually too fatiqued to think.&nbsp; But if we're prepared for such events beforehand, then I see no reason why we can't assist the process of minimalising the worst symptoms by adjusting our arrangements to suit, and thus shorten the duration of any flare up. Unfortunately, the optimum positions may be different for people with different injuries, and so it becomes a case of trial and error to assess which is best for each.&nbsp; It's a work in progress.&nbsp; Also, I should mention that sleeping therapies have never really been assessed or monitored by the physios,&nbsp; simply because it is impossible to monitor scientifically what patients do at home. Thus the shortage of advice.<br><br>I hope to be able to put together some guidelines on sleeping techniques for C/S shortly and will post them here, if allowed.&nbsp; And, what I would hope for is that the next generation of C/S sufferers don't have to experience the negativities that I have experienced, and can claim some knowledgeable control over their condition.<br><br>Again,&nbsp; thanks for your encouragement.&nbsp; Made me feel good.<br><br>Gerry

[gerry the neck]

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

Gerry

[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

[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
Feeling 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.