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The President’s Page

ADHESIVE ARACHNOIDITIS MRI DIAGNOSIS: It has required the advent of modern high-resolution Magnetic Resolution Scanning (MRI) to finally be able to accurately and objectively document adhesive Arachnoiditis as a disease entity. MRI has emerged as an almost magical diagnostic tool. Quality high-resolution MRI has determined that there are literally tens of thousands of adhesive Arachnoiditis sufferers throughout the world today and millions more who are unaware that they harbour this pathologic entity and are presently asymptomatic

More advanced non-invasive imaging studies in the future will be of even greater value in understanding what has transpired. THE BURTON EXPERIENCE with MRI diagnosis of Adhesive Arachnoiditis has been that the great majority of MRI studies being performed are technically inadequate to demonstrate the intra-thecal spinal nerves and associated collagenous scar tissue. Only at institutions where the radiologists and neuroradiologists have made the effort to technically tune their MRI scanners has definitive diagnosis been possible. What then basically constitutes appropriate technique for MRI scan to be considered “high resolution”. Adequate magnet strength; typically at least 1.5 Tesia Axial T2 weighted technique with fast spin echo imaging Saggital, axial and coronal imaging sequencing phasing EVEN WHEN the guidelines noted above are observed an MRI scan can be inadequate. HOW CAN THIS BE? Well, consider two similar Mercedes sedans. One runs well and the other runs poorly because of poor quality tuning. the same is true for MRI’s where proper shimming, proper RF pulsing and proper technique protocols need to be achieved.

If you are going for an MRI, read your forms carefully before signing. Ask if it is set on high-resolution and if the fat suppression switch is turned on. If you want the contrast dye ask for it. Do not move during your MRI. When you have your films count them and every time you go to anyone to show them count them before you come out to make sure you haven’t left any behind. make copies of your reports, never part with your originals.

AUSTRALIAN INSTITUTE OF RADIOGRAPHY

The institute interprets your main points as follows:
Arachnoiditis can be caused by intervention via a needle into a patient’s spinal column and as historically noted, incidence can increase with the use of Pantopaque contrast media (oil based iodinated media) (Dolan 1993). This type of contrast media was used from the mid 1940’s until the early 1980’s when non-ionic contrast media became more widely used. (Shah et al. 2001). The incidence of clinically significant Arachnoiditis associated with these oil based contrast agents is approximately 1% (Shah et al 2001). These agents are very slowly absorbed and can remain in the thecal sac for years after the procedure. Current water based non-ionic contrast media diffuses rapidly and is absorbed into the circulation and are associated with an instant negligible incidence of Arachnoiditis (Shah et al. 2001). oily myelographic contrast media can provoke an inflammatory process and become encysted followed by fibrosis, this fibrosis leads to CAA (Shah et al. 2001). There is no evidence to suggest that the intravenous injection of non-ionic iodinated contrast media causes Arachnoiditis. There is also no documented evidence that intrathecal non-ionic water based contrast media causes CAA.
QUESTION

The elimination of all “dyes”used in radiography
ANSWER

The use of iodinated IV contrast media plays a huge role in helping diagnose different pathologies. Patient care would be seriously affected if these ‘dyes’ were banned. the major complication when using these dyes intravenously is an allergic (anaphylactic) reaction to the contrast media.
QUESTION

Iodinated dyes still used everyday without patient consent
ANSWER

Patients are routinely screened, by asking a number of pertinent questions before the iodinated contrast media is administered. We expect the majority of institutions to get patients to sign an informed consent form as part of their protocols. Magnetic Resonance Imaging (MRI) has become the gold standard in investigating spinal pathology. Myeolography is rarely in the current clinical environment and is generally only performed if there is a contraindication to using MRI.
QUESTION

Not enough research/documentation into the adverse effects of iodine based contrast media
ANSWER

There are numerous papers on the safety and ifficacy of using non-ionic iodinated based contrast media. Adverse effects of oil-based dyes used in myelography are well documented in literature. There are a number of other interventions and factors that can cause CAA (refer Rice et al. 2004). Leaflets are included with the product and freely available to patients.
QUESTION

Radiography students are not educated on the pathological condition adhesive Arachnoiditis
ANSWER

There is NO NEED TO EDUCATE STUDENTS CAA, with only 1000 cases reported in the last 50 years and the elimination of oil based myelographic dyes (Rice et al. 2004). STUDENTS CANNOT BE EDUCATED ON EVERY PATHOLOGICAL CONDITION. In conclusion the intravenous injection of iodinated contrast cannot cause CAA, oil based myelographic dyes have been shown to cause CAA. The use of intravenous iodinated IV contrast plays an important part in the daily diagnosis of pathology. Patients are generally informed of the risk of the iodinated IV contrast media. The Institute hopes that this letter clears up some of the issues addressed in your letter. Contact us again if you need any clarifications.
Maybe the institute would like to interview some of the sufferers of the NSW and QLD Associations and clear up some of their answers, oil based dyes were still being used up to 1987 – 1988. Water Based dyes are not completely safe, if so why was Isodue taken off the market? and why do we have so many people in chronic pain after water based dyes. My last experience of a water based dye was that the 2 radiologists doing it commented that they hoped they could remember how to do it as they hadn’t done one for a while (2001) and proceeded to discuss what they were going to do with their weekend the whole time I was having it, I was not given any literature or leaflets or asked any pertinent questions. If there are only 1000 cases reported in the last 50 years, they must all be in the UK where 3,000 people were screened and 425 claimed successfully and they had been injected with Myodil, an oil based fluid, between 1962 – 1984.

 

LITIGATION

Many of you who attend our meetings know that we are going through litigation, with Stephen Smart and Associates as our Solicitor’s. After many years of going through paperwork and questioning sufferers there are SEVERAL sufferer’s so far who have been picked to go for extension of time.There is no question whatsoever that the Myodil caused their Arachnoiditis. Joseph Murray has never had an operation, only a Myelogram and suffers from shocking pain, he has a shunt draining his spine. He is a sweet, lovely natured man and to see him suffer through no fault of his own, and to lose the love of his life Iris to cancer was a shock that he and his family did not need on top of having this illness. Iris fought tooth and nail for Joe and now he has lost heart. This is such a sad story and not only only effects the sufferer but the whole family who love them. Only sufferers who have a diagnoses can go through and that is the hard part. BUT can we get honest reports. I know of people who had it written on reports a few years ago and all of a sudden it has gone. I have heard that a certain public hospital (not in Sydney) Radio-oligists have been told not to write Arachnoiditis on the report for fear of litigation and please refer to the above letter from the Australian Institute of Radiography who states that students are not trained to look for Arachnoiditis as there are not enough of us. Isn’t one sick person worth bothering about, let alone the dozens I have calling me, frightened and sick because they think they are the only one in Australia with it and their doctor’s won’t discuss it with them. Frightened to go ahead with litigation in case they lose their doctor who they need so desperately. My last 2 visits to a public hospital there was not one doctor who knew what Arachnoiditis was and as one elderly lady opposite me who had a rare liver disease said ‘If you don’t know what it is, why don’t you get a ‘bloody book and read up about it.

 

CORRECTION

Firstly New Zealand Sufferers can not sue the drug company. New Zealand has the ACC which is an Accident Compensation Board and you have to prove to them that you have Arachnoiditis. I read about one case where a sufferer was paid out about $170 thousand and then ACC changed it’s mind and wanted it back and he told them to get lost that the Govt had done it to him and he was not retuning any monies. Secondly NSW is not running a class action! it is individual litigation. The solicitors have provided a Radiologist and a Neurologist who charge $2000.00 for a report and it is not paid until after litigation is won. The Neuro Surgeon has already examined 6 of our members and they were all very pleased with him. I have not heard of anyone going to a Psychiatrist yet. No Stephen Smart does not do Legal Aid, it is a no win no pay. These people are being prepared for extension of time at this very moment so I do not know where the 5 years came from. I have spoken with Mr Smart the solicitor and he has said if anyone has any concerns to call myself on 02 9836 3611 or him on 02 9264 9290.

I do not consider myself to be a burden on society. I worked and paid my taxes for the best part of my life where I know that people who are well have not paid their taxes so are they a burden on society?? I would like us to be accounted for, if a sufferer is diagnosed then it is reported and we get a proper count of how many sufferers there are in this country. It should be an accountable disease.
This is an article on the net presented to the Parliament of NSW in 1994 and with a lot of hard work by a lot of people including Derek Morrison we don’t seem to have got any further than THIS. Maybe the last two words are correct. TIME EXPIRED.

 

PARLIAMENT OF NEW SOUTH WALES

The Hon. ELISABETH KIRBY (4.15):

I draw the attention of the House to the dangers of a drug called Myodil and the failure of governments, both State and Federal, to ensure its proper use. Myodil is a toxic dye injected into the spine for myelography. It was extensively used during the 1960s, 1970s and 1980s until 1987, , when it was superseded. If Myodil is used according to instructions and removed as soon as possible, it serves its purpose, though it remains a dangerous substance and complete removal can be tricky. If Myodil is not removed, it can cause Arachnoiditis, the incurable inflammation of the web-like membrane around the spinal cord. Arachnoiditis is a most disturbing disease since its symptoms may occur immediately or take as long as 20 years to develop.

Many people are not aware that they have Arachnoiditis and believe that they are suffering from something else. Many sufferers believe they are suffering from multiple sclerosis. The symptoms of Arachnoiditis include severe chronic pain in the back, groin, knee, leg, ankle, foot and urogenital area – possibly all at once – bowel, bladder and sexual dysfunction, loss of mobility, visual defects, seizures, paralysis and fatigue. When the pain is too severe it leads to nausea, light-headedness and a feeling of impending unconsciousness. Arachnoiditis sufferers rely heavily on pain-killers. There was no standard procedure in New South Wales hospitals to ensure that Myodil was removed following myelography, in spite of numerous warnings about the need to do so.

The warnings included the banning of Myodil in Sweden in 1948; the prescribed text for Australia diagnostic radiology students, including directions on the removal – aspiration – of Myodil as part of postgraduate studies; instructions provided by Glaxo, the manufacturers of Myodil, as far back as 1971 recommending removal of Myodil from the body and warning of serious adverse reactions if it were left in the patient; placement of Myodil on the Australian suspect drug list from 1973 onwards; the Adverse Drug Reactions Bulletin of 1 February 1975 by the Australia Drug Evaluation Committee noting the relationship between the retention of Myodil and adhesive Arachnoiditis; and the Medical Journal of Australia publishing a study that showed that complications of Myeolography can still occur even if recognized precautions are taken.

 

It is disturbing that there was no standard procedure to ensure the removal of Myodil in New South Wales. MY constituent Mr Derek Morrison wrote to numerous hospitals regarding the removal of Myodil. The reply here received from Prince Henry Hospital shows that Myodil was aspirated at that hospital, though aspiration did not occur as a matter of routine at Manly Hospital. Unfortunately Mr Morrison was unable to get further written responses to his inquiries. However, the fact that he was able to get two different responses is significant. It is also important that Myodil was not removed as a matter of routine in many hospitals.

 

Why was there such a wholesale disregard of instructions provided by the manufacturers of Myodil? Why did the Department of Health not ensure that Myodil was removed? Mr Morrison has been contacted by other Arachnoiditis sufferers who will testify that Myodil was not aspirated at other hospitals in New South Wales. I have written to the Minister of Health about this matter, but I am afraid that the response has been far from satisfactory. One of the main points in the reply dated 9 August that I received from the Hon. Dr B.P.V. Pezzutti in his capacity as Parliamentary Secretary to the Minister for Health was: The responsibility to follow these recommendations (to remove Myodil) was that of the individual practitioner performing myelography as determined by the clinical circumstances.

 

The context of this point in the letter is to shift responsibility for the removal of Myodil to the individual practitioner. However, the point I made in my letter to the Minister and the point I now make is that this should not have been allowed to happen. There should have been government regulations to ensure that Myodil was removed because of all dangers of the drug, which were known at the time. In my opinion, the situation that existed was the result of negligence on the part of the Government. (Time expired.)

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