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