Cervical Spondylosis ruminations

Correction to my last post.

The site is actually called 'Online Physio Forum' ....and search for Cervical Spondylosis.

Gerry

Hi have cs for 19 years now, and now told I have four disc in my neck gone, and bony growth on my spinal cord and nerves, just what I needed.

I`m a chef and been so for 39 years,so this is bad news for me, things drop out of my hands.

Agree people do not understand what cs is unless you go though it.

God know what I will do now chefing is a no no from the safety point of view for myself and others.

Been told you can have an operation for the discs and growths, but this is very high risk.

Hi raytheman

Just to say, there is no sure way of predicting future symptoms with this condition. 3 years ago I had problems with my hand and was told that it was an op or nothing, but the choice was mine. I choose not to, and gradually the hand improved with use. Although it still feels semi-numb, the power and coordination have mostly returned and I can do my job, decorating, quite comfortably compared to when the problem first appeared. So I would say, where you think you can manage ....don't choose the op.... it is risky, like you say.

Here’s a story……..

A long time ago, about 1990 in fact, I was referred to a certain London general hospital for Xrays, physio and neurologist assessment for my C/S. Had the xrays…..no problem. Attended physio (traction and exercises) which left me with a muggy sore head. I felt like I’d been physically mugged ( I often describe early morning C/S symptoms as being like having been mugged whilst asleep ). A few weeks later I got to see the Neurologist. Although she said that the xrays showed my neck to be stiff and tensed, with restricted curvature, she couldn’t actually see anything causing it (I’d been diagnosed 10 years previously with C/S by means of xray) and I was more or less dismissed as not requiring further investigation or treatment. I was more than aware of the symptoms I’d had for those 10 years, and I left that hospital feeling like I’d been cast adrift by those I most relied on. I felt both physically and psychologically mugged, having placed myself willingly in their hands. It was a bad experience which seriously affected the frustration and confusion I was experiencing with my condition. And, I should add, not a single word of advice on how to manage it on a daily basis. Needless to say, my attitude to these unfit for purpose systemised processes has been coloured ever since. In fact, I felt inclined to avoid having to endure such a disappointment ever again, and , on second thoughts, I’m going to name and blame. They deserve it. It was Chase Farm Hospital. Done.

About 3 years ago I developed the numb hand / painful arm symptoms, which needed attention. GP referred me to Physio, who referred me to a hospital based Physio, who referred me for MRI scan, then back to hospital Physio, who referred me to a Neurologist. She offered me 2 choices of Neuro, one being at the previous hospital I had attended in 1990. No thanks, I said, I’ll have the other, which was a lot further away. Rather strangely she said “ Good choice. You chose the best in London”. Hmmmm!I got a copy of DVD with MRI scan (which I cleverly made a copy of myself, and which I still have) to take to the Neuro. A few weeks later I attended for assessment. I was seen by a trainee Neuro (I assumed) who did all reflex testing and talked me through the MRI. I had some stenosis and multilevel degen. from C3 to C7, much as expected really. At the end I asked if it was possible for current symptoms ( not condition ) to self resolve in any way, and was told no, only with surgery. I was booked for further tests, EMG and another MRI, and eventually returned after 3 months to see the actual Neuro consultant. I briefly explained my 30 years of symptoms and how I like to try and manage it my own way, and she agreed that was a good idea, unless it suddenly got worse. So, any intervention was put on hold. Suited me. From GP to this point all took about 6 months, and 9 separate appointments at varying venues. True. In all that time, not once did I get any advice on how to manage my condition daily ( Perhaps I should exclude the Neuros from that criticism, because they’re busy enough with surgical matters ).

Anyway, I returned a year later for an appointed review. This time, as all seemed to be going well, although still with semi numb hand, I was offered the option of physiotherapy. I declined, explaining my new belief in benign neglect and sleeping posture therapies. At this the Neuro laughed, in a way I can only describe as ‘knowingly’, and when I left I thought to myself “ At last, a little common understanding”. Still no advice on self managing, but, after 30 years, I was getting used to that.

I really hope I haven’t blown my precious anonymity here. Don’t really want my Neuro inviting me in for an early retirement…for being too mouthy !

Moral of the story is this…..each time, and there have been many, I seek treatment, I go through the motions, and then I am very politely shunted back to square one, with no guidance, to start the whole process over again. Is it really any wonder that I choose to put my faith in home based therapies, which I’ve had to devise myself, and which seem to work better than what I’ve been offered. And, is it really any wonder that I should explore the theory of the C/S condition and try to rationalise how it really works. I have accumulated a lot of information on how a C/S patient might change their overview of their condition, and on how they can self manage it, to some degree, without endless clinical appointments, medications, or bad advice, and without conflicting with current practices. Controlling the intensity and unpredictability of symptoms is the way forward. My intention is to combine all into a comprehensive guidance booklet and make it available. Unfortunately, I don’t have independent means, I must work to survive, and therefore it may take some time. In the meantime, I hope that the arguments I have put forward in these postings are convincing enough to attract any C/S patients seeking a better way, and perhaps they might also encourage any concerned professionals to rethink systems which may look workable to them but are, in fact, mostly a repeating disappointment to C/S sufferers.

Gerry

Hi Gerry,

Your post is really interesting to me, I've had a similar experience and after coming up for 30 years of c/s, I have drawn the same conclusions as yourself, particularly regarding self-management (although my self-management isn't going too well at the moment actually.) I asked my husband to read your post because I hope it may help him to understand my reluctance to visit my GP. He doesn't understand how this can go on and on and "there must be something they can do". My symptoms are especially problematic this summer for no apparent reason, but if I do go to my GP I expect he will either refer me to the back clinic for more physio, which I really don't want, it just upsets my neck even more, or maybe he will send me for x-rays or MRI, after which I will probably be given another booklet by the hospital when they send me home to manage the condition myself because there's nothing they can do for me. It's like going round in circles.

I do hope you get your guidance booklet done eventually, it must be difficult when you're still working, but you have brilliant insight into this condition, I'm sure it will help a lot of people, I know I have gained from a lot of your advice and tips on this forum, so I will definitely look forward to reading it. And it's good to know that we are not alone :-).

Hi Lou77

Thanks for your comments. Sorry to hear your having a bit of a rough phase. They do come and go ! You might be interested in visiting the site I mention a couple of posts back .....Online Physio Forum. I've listed some self management suggestions, which work for me, especially regarding sleeping postures. You might find them useful in lessening the intensity of symptoms. Have to say that I've never been given a booklet of advice, and thus my own efforts. But if the booklet you were given reflects the sort of 'advice' they usually give I'd probably have reservations, especially anything to do with exercises. Have a look at my stuff and see what you think......there's only one golden rule...always allow 2 nights for any changes to happen.

Gerry

Hi saw the neurosurgeon, last week, to find out result of my MRI scan, result is I said no to surgery, as it is risky operation, the MRI scan shows so many problems not just the 4 discs which are no longer there, being refered to pain clinic, discharged from hospital, because I said no to surgery.

Well not much use were they?

Think if you are in yours fiftys they really can`t be bothered.

Well see what happens next, if this so called pain clinic works or not.

Still have to take the four pills to keep down the efects of the bony growths laying on the nerves of my spinal cord.

ray

Hi ray

Think of it this way....you've kept your options open for dealing with a fluctuating problem which might just improve with other treatments. If you'd had the op, these options might no longer exist. Anyway, you've been fully assessed and, if the condition deteriorates, you can always go back and consider again. Some would argue, me included, that the bony spurs are designed to grow to help stabilise the neck, and as such should be seen as an essential part of the body trying to repair itself, rather than something which needs to be removed. Learning how to accomodate what the neck is already trying to do to repair its own damage is, I believe, the key to self management techniques to control the symptoms. Nobody can forecast future rates of deterioration, so decisions for surgery are usually made ignoring this highly relevant fact.

Good luck with pain clinic....you never know !

Gerry

Hello Gerry the neck, I seem to have been reading your very interesting posts for years. I started when the site was in a different format.

I have joined recently as I have several nasty things to live with and finally plucked up the courage to post.

I wanted to ask you, if you don't mind about pain control.

I have rheumatoid and osteoarthritis and have had for over 55 years. I am significantly disabled by it and have had 6 operations and many , many epidurals, injections, bucket loads of pills, supports, physio..the lot.

I have learned to live with it all and consider myself to be a positive person. I am a granny now with five grandsons and a wonderfully supportive hubby of 40 years.

Insomnia and I are regular partners and it drives me barmy sometimes and I'm so tired all the time.

Have you any tips I may not have tried to help the pain. As said I've tried most painkillers etc; most have horrendous side effects and living in a fog is not for me. I have settled for the occasional Butrans patch ( I know I'm supposed to have it on all the time but it itches and blisters like crazy) with mst continuous as a back up as I find they have the least side effects overall. I don't take them everyday as I won't take them when my grandchildren are here. I have a great gp who has told me off many a time for being 'non compliant' as to my aversion to anti convulsants, anti depressants etc; as she feels they would help me best.

I can't fault the NHS in my case as they've generally been wonderful other than one or two hospital doctors who should have been in a different proffession.

As well as arthritis/neuropathy in my full spine, feet, hips, knees, wrists and fingers I have like you cervical stenosis , with myelopathy and radiculopathy. The pain in my neck/shoulder/arm/fingers is awful. I have to wear a collar a lot just to hold my head up and just hate it so much. I just keep on going but as I get older and slower somehow it's wearing me down and every day tasks are getting harder and harder.

Any suggestions? I think you have great insight into how we all suffer and have helped many people over the years.

Thank you, Fanny Jane

Hi Fanny Jane

First of all, my empathies. I have a friend who has Rheumatoid Arthritis, to a similar extent as yours, so I've a good idea of the difficulties. He was on Mouse Gene therapy (transfusions) for years, but now that's stopped working and he's back to gold injections and painkillers. To be honest, I wouldn't dream of trying to advise him whats best, except where, like you, he has also developed C/S recently (he had an op to strenghten his first neck vertebrae). He doesn't really get headaches, so 3rd to 7th vertebrae are probably still ok...ish., and thats really the area I've got experience with. If this is where your neck problems are then you might like to visit this site...Online Physio Forum..., and search cervical spondylosis. There are some tips there for sleeping postures etc, which I believe work better than other therapies.

Another interesting method for auto immune diseases I've come across is LDN ( low dose nandroxline or something like that). I know an MS sufferer who swears by it, and I've witnessed the improvements she experienced. Look it up on net, just search LDN, and see for yourself. Its a method which encourages your natural painkillers to do a better job, and from what I've been told, with little or no side effects.

This is best I can do, so I hope you find some system that works for you.

Gerry

Thank you for your reply. I will be looking up the sites you mentioned in a minute and also look into the suggestions you made.

For some of us there's not much new out there I reckon.

I do hope you get published one day as you obviously have a wealth of information to help people new to neck problems.

I shall continue to read the posts with interest, who knows what's round the corner. Thanks again.

The Neck’s Hierarchy of Priorities.

The neck is probably the most used organ of the body. Its worth saying because mostly we forget its there, which is also a good indication of its refinement. It has the responsibility of ensuring we can breathe, we can swallow, and that blood fow to and from the brain is uninterrupted. All vital functions. It is also designed to protect the routes which the nervous system uses to both gather and disperse vital information about threats to the body general. All these functions must be protected so that they operate successfully, otherwise, in theory, we die. On top of all this, the neck also has the responsibility to allow movement of the head, and thus the senses of seeing, smelling, hearing, tasting etc are fully utilised to aid our survival in a threatening world.

When an actual structural problem occurs in the neck, as with cervical spondylosis, the neck must then refer to its default protective system to decide which functions take priority, and which functions must be maintained, even if its at the expense of applying a direct reaction to that structural problem. These are pre-set inherent instructions which must be enacted regardless of any external interference. If this is true, then its not too difficult to see that how the neck deals with its own structural problem is demoted down the list of absolute priorities, simply because how it reacts cannot be allowed to endanger the other vital functions. In this way, its reactions differ from reactions to similar structural problems in other parts of the body ( perhaps with the exception of sciatica ). And it also helps to explain why the nervous system should choose to use referred pain, rather than direct pain, as a warning method. The use of direct pain in the neck area could easily cause a conscious reaction by us, which might endanger other functions. The nervous system inherently doesn’t trust these possible conscious reactions by us, and so, its methods are designed to counteract them, before they might occur. This is how refined the nervous system actually is.

So, we’ve established that how the neck reacts to structural problems might be well down the list of its priorities. Also, within those ‘delayed’ reactions there exists yet another sub-list of reactive priorities. Without these reactive priorities the neck would probably just stiffen up, painfully, until some sort of natural healing was achieved. It can’t do this because of the possible resulting dangers. And so, what it does instead, is to employ a whole range of ‘safe’ alternative muscular adjustments, which don’t threaten other functions, but which cause all sorts of ‘associated’ symptoms which we are familiar with as C/S ‘associated’ symptoms. It should be stressed here that these are not ‘actual’ trapped nerve symptoms, which in themselves don’t have such an effect on the neck. The ‘associated’ symptoms occur mostly because of threats to a nerve, rather than actual compression.

Basically, what I’m saying is this. The way in which the neck prioritises it reactions is always one step ahead of any possible conscious reaction on our part, and as such, any external manipulations should take this into account before being applied. If it doesn’t suit what’s already happening, its wrong. We might like to believe that we can outwit the nervous system, when in fact, we are always, by default, one step behind. Its inherent in the design !

G

Just revisiting the old Ruminations for nostalgic reasons. I know I got a bit side tracked into self management issues last time, and perhaps skipped past some of the more personal stuff. On re=reading some posts I couldn't help wondering how things have progressed for the many who took part in these ruminations......I feel it was a good thing....certainly got me investigating the whole C/S thing. However, things are a little different for me now....I might have to try and claim ESA benefits, not sure how that will go with the current regime, and I'm sure others situations may well have progressed. Despite our different levels of C/S, we're all in the same boat really, and sharing ideas is always good.

It would be really nice to see how everyone is coping. And particularly, if anyone has discovered any new ideas for helping other C/S ers.

I'm in two minds about this post i.e continuing something that's already history, but maybe worth a try.

Gerry

Hi,

Well an update, my has got worse, now walking with a stick, believe it has changed to cervical spine myelopathy. also now getting vertigo which is quite bad when it happens.

Re ESA apply for it, but don`t trust ATOS, they will say nothing wrong with you.

My appeal is being heard on 26 feb,please keep fingers crossed I win.

Also now applying for DLA with help from welfare person, who is helping me fill in the large form.

Hi Raytheman

Ta for reply and sorry to hear about worsening symptoms. Hope things improve...but you can never tell with C/S. I don't get leg problems or vertigo , so don't really have much helpful advice there. Mine is more headaches, stiff neck etc.

I see no option but to go foe ESA, as my confidence in being able to work ( I'm a decorator) has diminished recently. I'm 61 next month, so still have a year to survive before Pension Credits might kick in. I wasn't planning this downturn....took me by surprise really !

I have PT and Hospital reports ( from 2 years ago) stating I have usual degeneration/symptoms and I hope to get a letter from GP confirming. Hoping thats enough to convince for ESA, at least.

Am aware of ATOS reluctance to agree anything....I remember previous posts on that subject here......so I know it will be a battle of wills. Good luck with your appeal...stay strong and don't let them confuse the real issues. What a lousy job it must be to have to deny what someone with a certified disability is saying....doesn't bear thinking about ! We can only hope their lack of empathy revisits them when they are in need.

Again....good luck

Gerry