Sometimes in life it is difficult to know exactly how you feel and the older you get the more confused you get - well that's how my then 16 year old daughter saw it, she could not discern the fact that it is possible to feel two emotions at the same time. All hail the certainties of teenage life.
Seriously I am a wee bit screwed up right now because on Tuesday I was finally promoted to that legendary, or even fabled, status - diagnosed. My last MRI scan results came through and I was called to the local hospital to see my Neurosurgeon, DR Durward of the Glasgow Nuffield Hospital.
Doctor Durward worked for the Scottish Group in the Myodil Action of 1995 and from his attitude I think that he was not happy with the outcome of that action. He has a compassion about him which is hidden, but one can feel it, I am sure his sympathies were with those of his patients who were shattered by that result. He was engaged by my solicitor (attorney) who, after my last negative NHS MRI Scan in May of 2000, had fought for, and won, the necessary finance from the
Legal Aid Board for this new, enhanced examination . Again the wheels of justice running very slowly. Could that be deliberate?
Dr. Durward rang me at home the previous morning to say that my results were in, that there was Myodil in my spine, and, could I attend his clinic the following morning at 10.30 a.m. No problem, and I arrived with time to spare.
He began by telling that the Royal Navy, who were responsible for my myelogram in 1974, would not, or could not, tell him what contrast medium they had used on me. However, the enhanced scan has revealed what can only be Myodil that it is still present in my spinal column today. Thus, as neither MRI revealed any traumatic damage that could generate my symptoms, and given the state of my lumbosacral nerve roots, it was his opinion that the only applicable diagnosis was "Myodil Arachnoiditis".
Oh! Stand me up slowly brothers and sisters, that hurts!
I know this is no laughing matter but, I have been unable to work since October of 1998, and have despaired because nobody would give me any clues to what was causing my pain. It was me who found out about ARC trawling the Internet and suggested it as a possibility to my GP in August 1999. So here we are 6 GPs and 2 Consultant Neurosurgeons later, a result, a difficult to dismiss diagnosis which also names the culprit that laid waste to my personal landscape, almost leaving nothing in sight to take comfort at.
Thank the Lord for my friend and stalwart ally, Jude. I don't think I would have been able to put up as much of a fight as I have without her, she is a staunch ally and highly clever "Devil's Advocate" and motivator. It is she who scrutinizes everything before it goes onto the site, helping me by sorting the wheat from my creative chaffed, and, she builds great web-sites too!
If you like the Spine Gif she has created on my Home Page please tell her. I tell her that it is brilliant and true rendition of the pain and the other unwelcome sensations that course through ARC damaged nervous systems. If you would like to reproduce it I am sure she will be more than happy, as long as she knows first.
I have to say some in favour of the GPs caught up in with problematic cases of ARC, none of them had received any instruction, or other training regarding this entity, Arachnoiditis, and were, in the main, receptive, understanding and as helpful as they could be. Three of them have ask for, and been given, all the relevant medical references and papers that I have found in my quest to find out the truth about my condition..
If your local GP does not understand what ARC is, how it came to be one of the 20th Century's medical disasters and what it is doing to you, stay with me. We have ways of getting your point across now see details of how to below, I am sure that he/she will be on your side afterwards and you don't have to bribe them either.
Money, Money, Money, and none of it mine.
I have to to ask, how much all of this has cost the country? It was the Government that paid all the expenses in May 2000 and here they are paying again, very shortly my Solicitor/Attorney will be contacting them regarding their part in my medical history. I will also be contacting the British Legion to ask them to fight for my Pension Rights to be brought forward, because my injuries were received whilst I was in Her Majesty's boating club. This on top of the money that it costs for them to give me the barest of living standards, there are no flatter, squarer, monitors in this house, our digi cam is second hand, and, the wee Corsa in the yard is rusting as we speak.
My point is - Would it not be cheaper just to pay up and shut up, Mr. Blair? That is what your, now, Home Secretary, Mr. Blunkett promised ARC sufferers whilst he was Opposition Health Spokesman in 1994. All comments on that matter should be sent to No.10 directly if you feel moved to do so, it will land on the same mat as mind did. Who knows? If enough of us were to do so en masse, could it be ignored? If it is then I suggest all of you Brits out there request a copy of the Myodil file from the Department of Health, that would slow up the works something awful, eh?
Oh! Put a sock in it Mike. What did the paperwork say?
O.K. Enough of my babbling folks, this is what the Neuroradiologist had to say in his report, please call for a sick bag first if you are at all squeamish. No, It's not that bad - is it doctors?
"The lumbosacral nerve roots are seen as desecrate down to the L4/5 disc level from L4 to S1. The lumbosacral nerve roots are seen clumped and displaced peripherally around the lumbar thecal sac. This gives the appearance of an empty thecal sac, one of the typical signs of Myodil Arachnoiditis. The same appearances are well demonstrated on the sagittal T2 weighted sequences where there is an absence of nerve roots within the thecal sac from L4 downwards and thickening of the thecal margin posteriorly."
This a great vindication for me and all I have been asking for over the last 3 or 4 years, though I take little pleasure in it, other than being able to contradict my previous Neurosurgeon who told me that ARC as an entity "Only exists as a matter of litigation". This man also stated in his report that the localised ARC which he saw on the MRI was, "not sufficient to explain this man's claimed symptomology and you can take that to mean what you will." Obviously not a man with a sense of humour, nor humanity. Many of our Neurosurgeons are, unfortunately, cut from the same cloth which is why our people have such difficulty getting diagnosis', and are treated as if they were at the rear end of the heavenly brain queue.
More FDA Truths Revealed
I must also bring your attention to a paper published on Dr Charles Burton's site by a Dr. Suzanne Parisian. This 106 page document prepared for a court case reveals the inside story behind Pantopaque/Myodil and confirms all that we have all been saying for years. It also verifies almost all of the badly battered photocopies of US FDA documents which have been going the rounds, check to see if yours is in there, I have found mine.
Summing up this week, with the doctor's report on me, and, Dr Parisian's paper, it has been unpleasantly negative in some respects and mind-boggling positive in others. If it proves anything at all, it proves that this fight is fast becoming winnable, events are falling into place for us, soon we may have the upper hand? Who knows? In a few years maybe we will be holding reunion get togethers to celebrate the end of a long fight which has seen far too many tears and far too little laughter, it has also been a dirty fight, at times, with little or no compassion from the dinosaurians amongst the medical profession.
Let's now just put that behind us and take some comfort from the fact that, tears or no tears, the fight is still in us and we will have the last laugh.
Regards to all and my thanks to all of you who have, at some time or other, been a shoulder for my head, or a brickbat to wake me, or have sent me those all important papers. If I still owe anybody an e-mail, please kick my butt and remind me, I'm off to rest my spinning head.