Who will be next in your family?
Dr J C D Wells of Liverpool said at the 3rd International Copenhagen Symposium on Chronic Pain with regard to the United Kingdom that:
"Here are figures going across from the start of the National Health Service in the UK, when treatment became free, through our explorations of basic science and research, our discovery of the disc, better diagnostic facilities, better therapeutic facilities and so on, culminating in such a terrifying rise in disability that, if this continues, the whole of the population of the UK will be off work by the year 2017."
Therefore Arachnoiditis (ARC) is hardly just a litigation problem as my first examining Neurosurgeon declared it to be. Dr Wells' words underline why people are ignored, refused, denied and accused. They are regularly turned away by the very people employed to care for them. Over the past three years I have researched this subject very deeply. What is revealed here is merely the tip of an iceberg of such huge dimensions that the one which sunk the Titanic is minuscule in comparison.
The medical profession act as if they are deeply sceptical of patients' claims to have ARC because they are scared, on some level they must have known the truth and also therefore know that the truth is something they dare not face. Their spinal injections and surgical procedures are ruining and killing people on a daily basis. Suicides are not uncommon amongst those who suffer from ARC. The majority of the original iatrogenic cases of ARC were generated by the regular use of contrast media, both oil and water based, and must number in the millions, Pantopaque and Myodil were used in almost all English speaking countries where the writ of the UK or USA ran.
The myth which states that Water Based Contrast Media are not so dangerous as the Oil Based materials is just that. Water Based Contrast Media are now becoming recognised as being almost as bad as the Oil Based materials because they are miscible with the CFS and therefore can be carried around the whole Brain and Spinal Cord System. They can cause damage over a much greater area than those materials they replaced. See the statement on site entitled: The Swedish Position
Epidural Steroid Injections and Epidural Anaesthesia
Over the last two years at ARC.co.uk, I have been receiving more cases of this disease, which have resulted from the use of Epidural Steroid Injections (ESI) than I have Myodil/Pantopaque. Some people were given the injections for low back pain and claimed that this was the cause of their symptoms. More and more women were reporting ARC as a result of epidural anaesthesia during labour, finally there were cases, which the writers' claimed were the result of an ESI given in order to facilitate minor surgery. We have to wake up to the fact that this cannot continue.
The drug most commonly reported to be at the root of these cases is Depo Medrol. The company, which produces it, marks all their package inserts, "Not for Intrathecal use", that is not for the spinal cord, but it is exactly where the doctors are using it. Though the drug is not licensed for such uses in the first place and, despite the warning on the package insert, they inject thousands of litres into human spinal columns daily. They rationalise this use, and, what is worse, they are allowed to operate in this ad hoc way by government health departments around the world, simply because there was a body of thought that Depo Medrol is efficacious for lower back pain.
The simple truth is that it is not. There have been two studies performed very recently which conclude that Epidural Steroid Injections do not benefit the patient in the long term, although there may be some improvement in the short term. One of the highest medical authorities in the UK, the Cochrane Library, reviewed the medical literature in 2002. In their own words: "To evaluate the effectiveness of injection therapy in patients with low back pain lasting longer than one month." The report concluded that, "Convincing evidence is lacking on the effects of injection therapies for low back pain. There is a need for more, well designed explanatory trials in this field."
Another paper in the New England Journal of Medicine in 1997, reported on a study designed to answer the question, "Are epidural corticosteroid injections helpful in patients with sciatica..........?" This study,
According to it's authors, used rigorous methodology to evaluate the all the evidence and came up with the following verdict; "This report provides good evidence that epidural corticosteroid injections provide little long term improvement of functional status, self reported pain intensity or quality......................".
Both of these studies, and the unwritten doubt in many fellow professionals and patients alike, reveals why doctors have every reason to be shy of those of us in this world, campaigning for ARC victims, who are ready, willing and able people. Strong characters all who are both intelligent and self reliant enough to smell the rat and go looking for the nest. The real horror is that the rotten nest is constructed of the human misery and pain and the construction company employees all printed the following letters on their personal cards and notepaper, "M.D.", or/and, "Ph.D."
As inhabitants of the largest and greatest civilisation that the world has ever produced we are proud of our advancements, we beam when we look at the edifices in concrete and stone, iron and steel, carbon and other more exotic materials, which symbolise our progress. In the field of medicine we have always expected the best of our Doctors and given them our respect for apparently producing the excellent results, without actually checking that they have done their homework.
We trusted them, because they led us to believe that we could. They swore a sacred oath, a bond with themselves and whatever shape or shade they see their God in that they would do all they could to improve the lot of mankind where it was in their power to do so. Guess what people? They lied. Part of that oath binds them to keep secrets from the rest of mankind if they believe (in their utter arrogance) that it is best for us that they do.
It has always been my position that secrets require protection and that protection has to include lies. Lies that cannot be viewed in any but the darkest light because they involve us. What is not taken into account is that in this computer driven technological world we are more aware, better educated, and, strong enough that we require no more fathering. Neither should we forget the governments who have colluded in this secret keeping. The black hole of responsibility which swirls around the medical profession threatening to drag it into it's maw, also has government regulatory bodies, the pharmaceutical industry and the judiciary within it's reach in this matter too.
Depo Medrol was never licensed for the uses doctors put it to, but doctors often use drugs off license. If there is a "body of thought" within the profession that such use will be beneficial to the patient. This is nonsense because that body of thought can be claimed even if just two doctors agree upon it and the government bodies responsible for medical care have not changed legislation to prevent this from happening. Despite the numerous complaints by ARC organisations and private campaigners worldwide inaction in favour of the medical profession has been the order of the day for far too long.
The number of cases going through the law courts centred around just this one drug are seemingly invisible to them, no red flags are raised, no health ministers became alarmed at all. Despite the fact that very often one doctor's evidence completely contradicts that of another when both are being used as expert witnesses in such cases. Why should this be? That is the question we should be asking of our elected representatives.
Depo Medrol and it's generic copies are widely used in medicine today for a multitude of purposes, some of which, epidurals for instance, are outside of it's licenses. Demand for the product sometimes exceeds supply, because this is a very useful and beneficial drug and not all of its applications have the same disastrous outcomes. It is a pharmaceutical product that has overall be good to mankind, but never in my opinion, on the balance of evidence available when it has been injected into the spinal columns of humans.
Yet, in the face of full knowledge regarding it's adverse effects the company, which produces it, has not made any moves towards changing the formula to try and make it efficacious and safe to use for this purpose. The reason behind this is that the pharmaceutical companies of this world, having done their homework, know some things better than the doctors. One of those is that nothing (NOTHING) can be injected into the epidural space of the human spinal column without consequences.
Last week somebody sent me the abstract of a medical journal article. It described what happened to four patients who, for some bizarre and unstated reasons, had distilled water injected into their spinal cords. Not a lot of it either, the highest dose was 285mls and the lowest 100mls. Within fifty days of the injections all the subjects of this experiment were dead and the damage caused to their spinal cords, seen at autopsy, was extensive. Imagine what a toxic pharmacological product would do.
What is a very common complaint of many of those injected with Depo Medrol (as with Myodil), is that they were not informed that the injection itself carried risks. They were never told that, regardless of the benign nature of a medication or diagnostic fluid, every puncture of the spinal cord can have disastrous consequences. It opens up a hole in a system that nature sealed off to prevent blood from contaminating the Cerebro Spinal Fluid (CFS that bathes and feeds the Brain and Spinal Cord. Simply stated blood is one of the most virulent and effective potentiating agents of ARC.
You may not believe this next statement after all that you have read so far. What do you think doctors do to seal a hole in a spinal cord that is leaking CFS therefore causing the patient to suffer what is known as a Post Dural Puncture Headache (PDPH)? They draw off at least 5mls of the patient's blood and inject it into the hole! In effect polluting this delicate system and creating the possibility of a disastrous case of ARC. These procedures are common in Obstetrics Wards and Pain Clinics world wide, so common that doctors do not blink an eye when it happens to one of their patients
Even in these situations doctors display the contradictory behaviours, which mark their courtroom appearances. In one case although the patient displayed all the classic symptoms of PDPH after a second Epidural and continued to do so for a very long time, it went unrecognised and her medical handlers told her that she hadn't got it. She had imagined it! Another case of, "Doctor knows best." you cannot be suffering the pain you complain of because I say so.
The ironic twist in another story is that it could be that a patient's first epidural actually began to generate ARC which remained assymptomatic until the second injection was misplaced into the centre of the spinal cord itself.
The way she described her sensations led me to posit the theory that she had, at that time, developed what the doctors call, "an empty thecal sac". This is where the inflamed nerves inside the cord have first swollen and then shrunk after sticking to the inside wall of the structure, leaving a huge space in their wake.
Apart from the dangers already discussed this case highlights and leads me on to another cause for general concern the placement of these toxic materials in the "right" place. The correct placement of the material by doctors is often deduced by lost pressure techniques. Theoretically when there is no resistance to the needle it is in the right place.
This has to risky when the space targeted is tiny and therefore easily missed. Unless the doctor is highly experienced or sight guided by fluoroscopy, the lack of resistance to the needle may actually signal the incorrect space, especially where the epidural space has closed up as a result of ARC. I believe that this was the case with this patient. It is all too possible that the lack of pressure on the needle may not signal the Epidural Space, but the centre of a very rapidly formed empty thecal sac. The material therefore could end up in the empty centre of the spinal cord itself!
Another lady was ignored when she complained about headaches and I believe that her rapidly accelerated degeneration into fully blown ARC was due to the time that the hole in the drua of her spinal cord was leaking CSF. It does not take a genius to figure out that her system was being constantly inflamed by the lack of nourishment and lubrication that the CFS provides.
But, this lady is not alone in suffering from a misplaced epidural, there are many more on record here at ARC.co.uk. In the majority of them the placement of their epidural was not a large problem at the time it was done and we know from Myodil and Pantopaque cases that the development of ARC can take many years to disable somebody. However, in some cases the torture is more immediate and direct, and in others much more life threatening, especially where sloppy technique can lead to bacteria being transported or drawn into the spinal cord causing meningitis. A subject is discussed below.
To close on the subject of incorrect placement here are just two examples from our files. A couple of years ago one young woman wrote to me saying that her anaesthetist had tried five times to insert the needle in the right place during her labour. The following day her back was a mass of purple flesh and for some obscure reason she was sent to the Physio Department! Obviously the therapist on duty refused to touch her. Today she cannot play with the now eight-year-old son she gave birth to.
Another young Australian girl's life was ruined when the anaesthetist in attendance during her labour (who is also a qualified vet) tried unsuccessfully to place the needle three times. That much we know for sure. He may even have even given her two much of the steroid preparation being used, thinking that he had missed with his first two tries. He hadn't, he just thought he had. A very bad case of meningitis was the result and this young lady, as a direct result of that fiasco, is wheel chair bound. That case closes the dicey subject of placement and brings us on to bacterial or viral contamination during or after an epidural.
This year I have been immersed in placing ESIs under the microscope of research for another client. In this case the patient also contracted meningitis as a direct result of an ESI for back pain this created an epidural cyst, which led to an almost fatal case of meningitis, and, in the opinion of a Microbiologist she was lucky to survive. Once more, as a direct result of that horrific experience, she too has ARC.
The end result of this discussion concerning the use of the intrathecal route into the human spinal cord as a highway for drugs and diagnostic compounds leads us to a trilogy of truths.
· The first truth is that anything injected into the human spinal cord generates an immune system reaction by that organ which inevitably leads to the formation of scar tissue and ARC in an unspecified percentage of patients. These numbers being hidden by the medical profession's denial that the problem exists in the first place.
· The second truth we can draw from the above is that all spinal injections carry a risk of contamination, one that can result in death from the resulting infection, and, that the infection itself is iatrogenically caused, possibly by lax hygiene practices.
· The third and final truth is that government bodies with responsibility for the health and welfare of their citizens are also in the same ironic position of denial. They know the risks, and have long known the risks, they know the dangers, and also know that they cannot be avoided, but they cannot admit to this knowledge. To do so would be tantamount to admitting to their own murky positioning with respect to the pharmaceutical giants.
To illustrate this last point starting with the UK. The Managing Director of Glaxo in England during the Second World War was also a member of the War Cabinet. He oversaw the negotiations, which bought Pantopaque to the UK as Myodil - a product of his own company.
More recently the members of an English Inquiry Board into the anti depressant drug, Seroxat, had to be replaced en masse when it was discovered that the vast majority of them were shareholders in the same company is now GlaxoSmithKline.
Finally, a minister of the UK Government, rising to her feet in the House of Commons to discuss Arachnoiditis in yet another Parliamentary debate, had first to reveal to the House that her brother was a member of the board of Glaxo. She then told them that this fact had not influenced her thoughts on the subject!!!
In the US the FDA granted a license to Pantopaque (Myodil) in 1945 when only months before they had lambasted the Managing Director of the company producing it for deficiencies in the trial data due to lax work by the scientists who collected the information.
The steroid preparation Depo Medrol, was not granted a license for a long time, it had been presented to the FDA with a set of needles created by the manufacturers for the intrathecal injection of the product - the very procedure that it warns against on it's Package Inserts. The needles were rejected.
Patients who may have ARC as a result of a medical procedure are treated as pariahs by the medical profession, in most first world countries, who are terrified of legal actions. Nobody can convince me that they do not know that they are putting patients at a greater risk than they are prepared to admit, and, that they have to continue to use these procedures. If they don't then they will attract unwelcome attention from the press and public as to why they have stopped. Catch twenty-two was never so patently obvious.
None of my words here will serve any good. No lives will be saved. No further disability will be prevented. Nothing will flow from the suffering of many who no longer grace this earth with their presence and those of us who remain.
Our fellow members of the General Public may well be unaffected now, but they are all at risk in one way or another of joining us. My work and those of my fellow campaigners in this field is produced in the hope that they recognise this threat to their health and act.
The very clear and present danger of the practice of injecting fluids directly into the space described as the, sancta sanctorum, of the human frame by Dr Charles Burton of Cincinnati, and England's own Dr Sarah Smith, must be removed from the list of medical insanity's that have plagued mankind as that science has progressed. Unlike all the other scientific disciplines it is only medicine, which introduces new procedures based on subjective rather than objective evidence.
Those of us with the disease can only do so much because of the severe restrictions ARC places upon our lives. It is up to the general public both as voters and consumers to lead the way:
· unless they demand answers to the questions posed here from government ministers (in full and not just some paternalistic fashion),
· unless they refuse to have these procedures performed on their person without the risks and benefits being clearly and fully described to them,
· unless they stand up for themselves as possible victims and refuse to see those with white coats as infallible,
people will continue to be disabled, they will carry on suffering alone, their lives will still march to the drumbeat of chronic pain and other dehumanising symptoms that entice them to end it all.
Finally, this long journey of discovery, following the thread of Myodil/Pantopaque through British and American medical history has shown me that it was but a part of a much larger issue. I was not very far down the road when the Depo Medrol, ESIs and Epidural Anaesthesia revealed themselves and, shortly after that, spinal surgical procedures also became part and parcel of story. Many who wrote to me, especially from the USA, had all three types of medical intervention as part of the history of their ARC. There was no way that I was about to abandon them because their cases were much more complex than a simple myelogram leading to ARC.
My researches have revealed the following:
· Firstly, no matter how medical professionals try to make it more complicated, there are only two natural ways to contract ARC. One is through trauma to the spinal cord; the other is contamination of the CFS by foreign bodies such as bacteria and viruses, which cross the blood brain barrier.
· Secondly, following the same logic, with medical procedures, there are only two ways to contract ARC. One is through surgery, which is of course the equivalent of natural trauma, and like that trauma can include blood contamination of the CFS. The other is through injecting foreign substances into the CFS, which are treated by the body in exactly the same way as it would treat bacteria and viruses.
Those principles very quickly and simply set out why I believe that it is stupid to mimic nature, unless you know exactly how she will react. In the case of ARC I feel that it is imperative that we all work together to win changes in legislation that prevent the ad hoc usage of drugs and medical procedures without clear, objective, evidenced trials. Hopefully we will change the view of the medical profession as infallible. Such changes will ensure that this will never happen again.
Not to do so would expose those whom we brought into this world to the same dangers.
© M L J Feehan 2003