Cervical Spondylosis

[gerry the neck]

Hi
I am a long-term Cervical Spondylosis ( C/S ) patient. I was first diagnosed with C/S by means of Xray at age 30. I am now 60 and for the last two years have displayed the classic C/S symptom of numb / clumsy hand which indicates compressed nerve at C5/C6. Before this particular symptom appeared I had 30years of, what I call, associated C/S symptoms ( headaches, stiff neck, frozen shoulder etc ) indicating neck reactions to percieved threats of nerve compression, but never developing into actual nerve compression until recently.

I believe that my C/S resulted from a car crash I was involved in, aged 10. The problem was not spotted then and it has affected me in various ways ever since. My concern here is that all treatments and therapies I've undergone, both physical and medicinal, simply increased my sense of futility with such methods. I've had neck exercises, traction, collars, painkillers, etc etc, and the less said the better. Over the last few years I have re-considered the whole complex C/S issue and subsequently I have devised an overview of the condition which, although probably not in agreement with the textbook descriptions, makes perfect sense to me. I was never satisfied with the standard descriptions of C/S that I encountered, although the varied symptoms were generally described correctly. What was always missing was an analysis of each symptom and reasons for their intensity or unpredictability.

So, below is my version of a guide list to the varied unpredictable symptoms associated with C/S. Also I include my version of an overview of long-term C/S.

Any relevant comments would be appreciated.

Below is a list of associated C/S symptoms and a guide to how they should be assessed in terms of their relevance to the cervical nerve compression problem.

1: Trapped or compressed nerve in neck: This is the primary cause of all the symptoms. Although not necessarily painful in itself, it’s reaction to it’s own distress is to radiate primary and secondary symptoms throughout the body. Depending on how advanced or degenerated the C/S has become over time, the radiated symptoms can be occasional, on/off, or more permanent.

2: Arm Pain: Mostly resulting from incorrect nerve signals. If there is any associated numbness or tingling, then the arm pain is usually a direct symptom of the trapped nerve in neck, rather than a muscular reaction.

3: Numb / Clumsy Hand: This symptom is a direct symptom of the trapped nerve in neck. Usually, the middle finger can’t be straightened horizontally and there is less grip and power than normal. It needn’t necessarily be painful, but it is awkward to use the hand.

4: Leg Pains: These tend to be a combination of direct symptoms of a trapped nerve and muscular reactions. Normal mobility can be affected.

5: Bladder problems: These are a direct symptom of a trapped nerve. Usually not painful, but can cause discomfort and a need to urinate frequently.

6: Bowel and Sphincter Problems: These are a direct symptom of a trapped nerve. Not usually painful, but will cause problems with bowel movements.

7: Stiff and Aching Neck: This results from protective muscular reaction which limits further aggravation to the nerve.

8: Headaches: Mostly starting at base of skull and spreading throughout the head. These result from stiffening neck muscles and, as such, are a by-product of the protective reactions.

9: Shoulder Aches and Pains: These mostly result from incorrect nerve signals. Usually, there is no real physical problem with the shoulder, but the localised muscles are reacting as though there is.

10: Chest Aches and Pains: As with Shoulder Aches and Pains. Sometimes the pain will be pinpointed and concentrated ( for instance, at centre of shoulder blade ). But this should still be assessed as a reaction to false signals rather than a real physical problem in that area.

11: Frozen Shoulder: As with Shoulder Aches and Pains, except the muscular reaction enters a cycle of reactions which usually doesn’t resolve for several months. Frozen shoulder can come with general arm pain as well.

12: Mugginess and disorientation: As with Headaches, these symptoms are associated with overworked protective muscular reactions in the neck.

13: Lower Back Aches and Pains: These usually result from secondary muscular reactions and adjustments the muscular structure must make to compensate for reactions to other symptoms.

14: Fatigue and Exhaustion: This results from continual protective reactions being overworked and occasionally demanding total rest so that natural resources of painkillers ( dopamine etc. ) and energy levels can be restored . It would usually occur naturally during sleep, but, as the aches and pains still have to be suppressed whilst we sleep, the resources can get depleted and the body demands that they be restored, whether we are sleeping or not. The vulnerability to the risk of further aggravation to the nerve is acute during this phase, because the protective reaction system has temporarily shut down to enable replenishment.


Finally, under normal circumstances ( non- C/S ) we accommodate a fairly negative overview of pain. The implications of pain are that it will most likely worsen if we don’t feel assured that we can treat the injury successfully, This understanding of pain, however, doesn’t always relate to C/S aches and pains because there is usually no physical problem in the local painful areas which might require fixing. A combination of aches and pains, and confusion over how best to react to assist healing, can easily overwhelm the C/S sufferer and disrupt any resolve to adopt proper neck therapies which might help overall. In theory, by not having a proper understanding of the varied symptoms, we allow the overwhelming to happen, and usually end up making irrational decisions about pain treatment and medications, rather than exploring less drastic methods. Putting the distracting pains into perspective should help with interpreting their importance, in remedial terms, and also help with highlighting the need to focus on useful neck therapies.

It is not the intention of this guide to dispute or conflict with professionally held opinions. All opinions explored in this guide should be seen as complimentary only. The intention is to encourage a fuller understanding of C/S symptoms in contrast to the general professional literature and advice which are currently available.


And here's a generalised overview for the C/S condition. I can go into much more detail on specific issues like appropriate non- aggravating therapies, particularly concerning sleeping arrangements, which might minimalise the need for painkillers, but I'll leave that for another time.

1. C/S should really be re-classified as 2 distinct conditions...Arthritic Based and Injury Based because there are distinct differences.

a: Arthritic Based C/S might degenerate in direct relation to the overal degenerative progress of the general arthritic condition.

b: Injury Based C/S might only degenerate, if at all, through normal wear and tear. I believe this is the version I experience as I have no other arthritic problems besides the usual for my age.

In order to be able to predict the future progress (possible degeneration or regeneration ) of the condition it becomes important to be able to make this distinction.


2. Common to both the above is the issue of Pre-Trapped Nerve symptoms and Post-Trapped Nerve symptoms.

a: Pre-Trapped Nerve (' associated ') symptoms include headaches, muggy head, stiff neck, frozen shoulder, pains in shoulder / chest etc.

b: Post-Trapped Nerve symptoms include arm pain, numb hand / leg, loss of power in hand / leg, bowel and bladder problems.


These two symptom groups should be separated because the therapies we need to apply to them are different. Thus the many differing opinions we encounter on how best to treat the symptoms....we are simply not always discussing the same issues.


3. Again, common to all the above, is probably the most important issue i.e. that the neck is continually trying to naturally correct itself and protect itself from future threats. Most of the Pre-Trapped Nerve ( 'associated' ) symptoms seem to result from neck reactions to possible threats and, although persistant and distressing, maybe should be read as warning signs rather than full-on C/S symptoms where a trapped nerve can cause dysfunction in arm, hand or leg. Strangely, in my case, the onset of actual trapped nerve symptoms gave me some relief from the worst 'associated' symptoms, and so, I can say, that my condition improved somewhat in terms of how I felt in general. However, I'm not naive, and I know that it could change again as the wear and tear progresses.


4. My real concern is not what I'm currently experiencing. I am being monitored and advised professionally, although I do think there is a major shortage of advice on self-management. My concern is the many years I experienced beforehand where I had no convincing explanation for the symptoms I was then experiencing. It was distressing and depressing and could easily have been handled with better advice and information.

5. C/S can be seen as a recurring threatening / healing experience with varied symptoms appropriate to both phases. The regenerative activities of the neck, as it attempts to protect from nerve compression, should be the focal point of any therapies employed. The first two questions should always be...'what is the neck trying to do' and 'how do we assist it to achieve it's purpose with the least possible distress'.

I realise that determining how the C/S condition will progress ( degeneration v regeneration) is difficult, even impossible in many cases, and, as such, it creates it's own difficulties in terms of giving standard useful advice. Knowing this, the issue of self-management becomes ever more important in seeking ways to improve the quality of our lives.



Gerry

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[Neckdespair]

Gerry,
Thank you for this wonderful post. I have suffered for 30 years with this very nasty problem and have over the years have had very poor help from the medical profession, most of whom seem totally lacking in understanding, knowledge and sympathy of caring for and treating patients with cervical spondylosis. I was once diagnosed as having a brain tumour by the chief neurologist at a leading London hospital, who on review with his colleagues decided that after all it was in my mind. His recommendation to my husband was to take me on holiday for a week. It took me years of pain and many consultations to have the correct diagnosis.
In the past - and I have been relatively ok for 8 years until my present flare-up - I have found it very difficult to deal with the depression, frustration and feelings of despair as I have been grounded for many months with pain and very unpleasant neurological symptoms with no help from the medical profession and lack of sympathy from friends and family who tend to think you are a hypochondriac.
I have foolishly just spent two weeks painting some shelves and have now gone into a nasty flare. I am loathe to go to my GP because I have no confidence in doctors any more. You suggest that your treatment has been much better recently, but where do you find the correct help? I am in London and close to the Royal Free Hospital but I am wary of the fact that they seem to be more qualified to treat lower back pain instead of the complexities of CS.

Where in North London is there a specific treatment/help/support centre so that I can get some help?
Thank you again for your posts. You are a wonderful inspiration.

[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.

[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.

[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

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