I first complained of tingling and pain in my legs in 1974 whilst home on leave from the RN having just completed a year's draft with Flag Officer 2nd Flotilla. My doctor at home diagnosed a slipped disc and ordered bed rest with a board under the mattress. This had no physical success, in fact the sheer boredom of this situation drove me on to my new draft, despite the pain, at HMS Dolphin, which was just across the road from RNH Haslar. First class, they could surely put me to rights!
Obviously, my first duty was to report to the Sick Bay so they could evaluate my condition, from there to the Hospital for further tests and treatment. Little did I know then that this was the first step on a long journey that would never end. In the course of that year I had several epidurals, three corsets, a myelogram, a manipulation under anesthetic and a sobering 4 weeks in a plaster jacket. The reason given for the manipulation was that my myelogram showed that my Coccyx was twisted over to the left hand side and that this was the reason for the pain.
I was given the choice of the manipulation or an operation to fuse the appropriate vertebrae together,
I am very glad that I refused the invasive operation. (It had a 50/50 chance of failure according to my consultant.) So it was manipulation followed by incarceration in a plaster jacket starting at the chin and finishing at the zipper level. Back on the ward I was then left on my back, for 8 very excruciating hours. Then followed weeks at home, I was the awfully smelly one scratching away on his own in the corner!
When they got me out of the plaster jacket I was still in some pain and discomfort, but, after a year of being messed around without any apparent cure, I decided enough was enough. I would put up with the pain, which they had managed to reduce to a level I got quite used to, and get on with my life. The Naval Surgeons who dealt with my case had always given me the impression that they felt that I was "swinging the lead" and that added extra pressure to my desire to move on. As with all of us, at various times, I put up with, pins and needles in my arms and legs, lower back ache and a pain in the middle back area where they had injected the myelographic fluid.
I stayed in the service until 1978. Once more back in civilian clothes, I worked for seven different employers (I even ran my own greengrocery business for 3 years), throughout it all I fought off the pain and only took myself to the Doc's when it got really bad. The worst incident was when I woke one morning to find that I had jammed up at the hips and couldn't bend at the waist. Getting dressed was hysterical. It was quite funny when the Doctor called at my home, going to the Surgery was definitely out of the question. I was alone in the house at the time and sort of weebled down the corridor to answer the ringing bell like a cheap toy from a cereal box. He then administered a drug into the rear area which loosened things gradually and prescribed anti-inflammatories.
The whole charade came to an end in Oct '98. I had been suffering a stabbing pain in the right hand side of my spine in the middle lumbar region since the May of that year. This was not constant but set upon me whenever I had been on my feet for more than 30 minutes, then it got worse. I had to give up my job on the recommendation of both the Doctor and the Osteopath. Shortly thereafter I had to sell my house. As the weeks dragged into months I gradually sold off many of my own possessions to keep home and hearth together, during this time I was renting my house from the fellow I sold it to! Not knowing the ins and outs of the DSS I had no idea that I could have claimed more money and they certainly weren't telling me. The Doctors were still signing me off as not fit to work.
Throughout this time my symptoms were getting worse and the medication I had to take to cope with the increasing pain was making my head spin. The doctors (God bless em all) were at a loss to diagnose my condition and in fact I first stumbled across it whilst researching a completely different disorder for a friend. I downloaded the information I had found and presented it to my Doctor. He admitted that, given the symptomology, Arachnoiditis was a definite possible, but that he personally hoped it was just a herniated disc.
There then followed a further period of inaction on the medical side whilst they were putting me on the list for an MRI Scan. Whilst I was waiting for this some light shone in the darkness, Jude had plenty of space and offered me accommodation, it involved moving over 700 miles, but as things had ground to a halt and windows of opportunity had closed up all around me, I decided to take the plunge. Just before we left for the Highlands and Islands I called on my Doc to bid him farewell. On that visit he told me that the Consultant on my case (the one I never got to meet) had decided that the diagnosis I had come up with was right and there was therefore no point in giving me an MRI Scan, yet no-one was willing to write it down.
In Scotland general practitioners have a more positive approach and, having arrived in December 99, I got to see a consultant in the flesh. He pooh-poohed the very existence of A, saying that it was still a matter of some litigation(?) However he sent me to Glasgow an MRI Scan. When I went to the Doctor's Office for the report I was in for a surprise. The dismissive Consultant had diagnosed Arachnoiditis (the very condition he said was a matter of litigation) and to rub salt into the wound he described my condition as "unremarkable".
This had to be questioned and, thankfully, my GP was as happy with the results as I was. The consultant was asked to clarify his remarks, especially as he had done a 360 degree turn, diagnosed Arachnoiditis, but then said it was "unremarkable. The second letter was as confusing as the first, this time he had some further legal niceties. "Yes." was the reply, I had Arachnoiditis but it did not legally qualify as Arachnoiditis as it was only detectable at one level. Where do you go from there?
The confirmation that I had Arachnoiditis was no sweet pill to swallow, I was still hoping the source of my pain would be herniated disc, but to get confirmation and then dismissal in the same sentence made it extremely bitter. Here am I almost two years off of work, having sold everything I own (except for this machine), moved 700 miles to try and get closer to a diagnosis and it appears like a ghost, it's there but it's not.
The real tragedy of my story is that it is not the only one. There are others, thousands of them, in 107 countries world wide who are being subjected to the same sort of stress to go with the pain of their conditions. The reason for this type of treatment can only have one of two causes:
1. All the patients (world wide) who present these symptoms are the subject of a psychosomatic ailment brought on by life's stresses and strains.
This perfidious easy explanation of what is really happening is criminal. In one blow it strike's at the patients honesty and credibility in what they are saying to the world, secondly it throws them into a flat tail spin as they question themselves and try to field questions from their nearest and dearest. Thirdly their bruised credibility is paraded through a Social Service system which requires a definitive diagnosis before it can act and will even then question that diagnosis to the very limit.
2. The patients are suffering from a chronic disorder (Adhesive Arachnoiditis) which has as it's
root cause the very diagnostic tool (myelography), or pain relief therapy (epidurals), designed by the medical profession and the drugs companies to ease their suffering.
Certainly one could excuse medical practitioners who have used these processes,
unknowingly, as they struggle with an ailment to overcome it; if that is indeed what they are
doing? What cannot be excused is the fact that for more that 60 years drug companies have supplied the medical profession with highly toxic materials designed as contrast media for injection into the human spinal column where it will almost certainly cause damage. It cannot be excused that government regulatory bodies have allowed this to continue even when they had the evidence, from studies performed by the drug companies prior to the drug's release, that should have ruled these chemicals unfit for use on humans.
There is an evil synchronicity here which as a student of human history I can see only too well. This issue is only a "Quiet Web of Suffering and Conspiracy" for the same reason that a lad will lie about breaking a window with his football, the lad cannot afford to pay for the window. In the same way neither the Medical Profession, Drug Companies or Governments around the world can afford to come clean about Arachnoiditis, they are all afraid of the cost. Therefore it suits parties, from their high positions of power and respect, to glower balefully at sufferers in public and thereby easily undermine and silence them. This ugly ménage sends the patient on an interminable and unending circuit of medical, clerical and legal confusion till they finally drop, exhausted and financially ruined by their struggle.