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#21 gaffa09

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Posted 25 September 2015 - 10:13 AM


This is  from Charles Burton

Australia Once Again On Target:
Chemical Meningitis and Adhesive Arachnoiditis

   

After more than 70 years of medicine and government effectively "sweeping under the rug" the addressing of the issue of causing disabling chemical meningitis through the ill-advised administration of steroid suspensions for the purpose of myelography in literally hundreds of thousands of unsuspecting patients throughout the world.  New Zealand has led the way but Australia appears to have, once again, stepped forward to focus on this issue of "the right thing to do" in specific regard to adhesive arachnoiditis the specific disease resulting from chemical meningitis caused by the use of oil based myelographic agents.

In February 2013 the Federal Parliament of Australia appealed to Glaxo Smith Kline to "do the right thing" in assisting patients disabled by adhesive arachnoiditis from their products by setting up a charity for this purpose.  This request has not yet been initiated.     

It remains most most disturbing that after over half a century no one has been actually held accountable for this blot on world health care.   Also, because the issue has never been provided with the exposure it deserves, patients and physicians have not learned from history.  The continuing fall-out from this phenomenon has been the continued practice of ill-advised blind epidural steroid injections (using suspensions containing toxic materials) continuing to cause disabling chemical meningitis leading to the pathologic entity adhesive arachnoiditis.


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#22 gaffa09

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Posted 25 September 2015 - 03:11 PM

This  is  were i am at  at  this moment======= I have  had  an e-mail from a  member of parliament asking if I would  consider  going  to  the news media  again  with all  the information   that i have 

This is  on the  go  and hope  to have answers  very  soon 

 What  i am wanting is  if admin  can set up a  special  place  for  sufferers  to  register==  with  names contact numbers   and  what year  they had  there injection  with  Myodil

I am  also  considering   going  like Australia   and  taking legal action   so  will need  a  lawyer  who  can  do it  pro-rata 

 

or sufferers  can  contact me 

 

 I  will need  your help and input 


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#23 gaffa09

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Posted 07 October 2015 - 05:04 PM

26 June 2015 Burbery v Glaxo Wellcome Australia Pty Ltd [2015] NSWSC 820 & 18 other matters Garling J Today the Supreme Court concluded that there ought be a separate hearing, in advance of a final hearing, of limitation issues associated with 19 separate proceedings brought against Glaxo Wellcome Australia Pty Ltd (“Glaxo”). On 30 April 2014, 19 plaintiffs commenced separate proceedings against Glaxo, claiming damages for personal injury arising from the administration of an oil-based contrast dye known as Myodil in the course of a procedure known as a myelogram. Each plaintiff claims that as a consequence of the use of Myodil they now suffer from adhesive arachnoiditis. The procedures are alleged to have occurred between 1971 and 1984, with the majority in New South Wales. The defendant, Glaxo, distributed and sold Myodil in Australia until 1987 when it was discontinued. The plaintiffs claim that Glaxo owed each plaintiff a duty of care to cease the supply of Myodil at a point prior to 1971, when it became aware, or ought to have become aware, that Myodil caused patients to suffer from adhesive arachnoiditis. The plaintiffs also claim that Glaxo owed a duty of care to provide a product warning to health care professionals. The plaintiffs claim that by continuing to supply Myodil and by failing to warn health care professionals Glaxo was in breach of its duties. Glaxo admits that it supplied Myodil in Australia, but denies that it owed any duty of care to the plaintiffs, and denies that it was in breach of any such duty. Glaxo does not admit that the plaintiffs underwent myelogram procedures and specifically does not admit that Myodil was administered, rather, it submits that a different oil-based contrast medium was the available product in Australia used in myelograms. On 10 December 2014, the plaintiff in each proceeding filed a Notice of Motion seeking orders that any argument or application to extend time for bringing proceedings be heard at the final hearing of the proceedings. The plaintiffs submitted that their various disabilities, which they attribute to the administration of Myodil, may render giving evidence difficult, and that the giving of evidence twice at the separate determination of issues in the proceedings would be prejudicial. On 11 March 2015, Glaxo filed a Notice of Motion in each proceeding seeking summary disposition of each proceeding on the basis that they had been brought out of time and had not been prosecuted with due dispatch. In the alternative, Glaxo submitted that the issue of This summary has been prepared for general information only. It is not intended to be a substitute for the judgment of the Court or to be used in any later consideration of the Court’s judgment. whether an extension of time should be granted should be heard separately and in advance of the final hearing. The hearing of the Motions occurred on 16 April 2015 before Justice Garling. After the hearing concluded, a letter was sent by Glaxo offering to cover the cost of taking evidence on commission for each plaintiff so as to deal with the issue of prejudice and minimise any inconvenience and difficulty to plaintiffs associated with the giving of evidence twice. Justice Garling acknowledged the advanced ages of many of the plaintiffs and the state of their health and the difficulty that may be associated with the giving of evidence, but was satisfied that the offer made by Glaxo to have evidence taken on commission in the plaintiffs home or close to their home, minimised such difficulty. Justice Garling found that a separate hearing dealing with the limitation issues in advance of a final hearing would substantially narrow the issues for trial, and in some cases, may resolve the proceedings without a need for a full hearing. Justice Garling found that it was in the interests of justice to make orders for the separate hearing of the limitation issue in advance of the final hearing. Justice Garling ordered the parties to bring in case management orders, and for the costs of each of the Motions to be costs in the cause.


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#24 gaffa09

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Posted 07 October 2015 - 05:57 PM

I have  a  question   for  all  that  reads  this  site

How  come    the  word  limitation  comes into  this  problem  when  Doctors  and  specialist   back in  the  80s back doctors did not  know   about arachnoiditis   ==  or  did  the specialist  hide it from us 

I believe   that all doctors  did not  know    and  even   had not  heard  of Myodil  or pantapaque which  was  manufactured by  Glaxo

Glaxo knew  about  problems back in  the   mid  1940s 

​ until  I  investigated    this  very  early  90s   then  went  public  with it 

My investigation  have  showed  that  Arachnoiditis   can  take  up to 20 years   to show  the  full  effect of  this  incurable health problem  And doctors  still  don't know  about  arachnoiditis

  this is  fact    


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#25 garcialilliem

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Posted 07 October 2015 - 11:55 PM

An appeal to the legal profession from the MAG Chairperson

Glaxo has never been found guilty of inducing Adhesive Arachnoiditis with Myodil (Iophendylate). The early 1990's UK litigation against Glaxo did not bring adequate compensation or even recognition for the majority of people who were permanently injured by Myodil. Thousands came forward but only a few hundred received recognition and a pitiful amount of compensation because the victims were persuaded to accept an out of court settlement. This was because Glaxo withheld extremely important research findings about Myodil, the DoH would not release patient's records unless solicitors agreed to only pursue Glaxo.

Also you can read this file, i have found when did essay writing http://pn.bmj.com/co.../4/237.full.pdf, it might be useful.


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#26 gaffa09

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Posted 08 October 2015 - 08:53 AM

Thank  you Garcialilliem

Glaxo paid out undisclosed millions  to  I think 426 UK sufferers  WHY

 next is  that arachnoiditis  can be caused by  trauma  or other   injections into the  spine

I am working on Myodil  because  that is  what i have that has  gone    to my  brain as  many  ==  There  are millions  in the  world suffering 

Glaxo  also  knew  about  the  effects  back in  the   40s

I also believe  that many   sufferers  have past on  

I  can assure you  The pain is very  real==very cruel  with not  end  to it 

 

 watch  this  space   for more  info  coming up  in fact  5  videos


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#27 gaffa09

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Posted 09 October 2015 - 12:03 PM

 

Mechanism of the making of Arachnoiditis-C.Burton


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#28 gaffa09

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Posted 09 October 2015 - 12:31 PM

 

 

 

 

Well  you  may   realize   that we  have been   hacked most  videos== my  PC  and  programs     does that  tell  you  something

 

message   from  overseas

 

Hi John, interesting FACT it works here, USA CANADA UK GERMANY and importantly NZ you've been hacked mate I guess by you know who

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#29 gaffa09

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Posted 09 October 2015 - 12:34 PM

 

 

 

 

 

Hi John, NOPE they are working ok, I have spoken to people in US Germany Australia and UK they ALL can see and read, something is going on over in NZ

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#30 gaffa09

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Posted 09 October 2015 - 12:38 PM

 

John Huntley aka Gaffa09 is the chap wearing the glasses.


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#31 gaffa09

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Posted 09 October 2015 - 12:41 PM

 

 

 

Hi John, NOPE they are working ok, I have spoken to people in US Germany Australia and UK they ALL can see and read, something is going on over in NZ

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#32 gaffa09

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Posted 09 October 2015 - 12:58 PM

 

Don''t  worry I  have  copies  and  they  are  for  to public  to view


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#33 gaffa09

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Posted 09 October 2015 - 01:23 PM

 

Epidural Steroid Injections & Arachnoiditis - HD


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#34 gaffa09

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Posted 09 October 2015 - 02:12 PM

http://www.webmd.com...arachnoiditis#1


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#35 Admin

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Posted 09 October 2015 - 02:17 PM

This  is  were i am at  at  this moment======= I have  had  an e-mail from a  member of parliament asking if I would  consider  going  to  the news media  again  with all  the information   that i have 

This is  on the  go  and hope  to have answers  very  soon 

 What  i am wanting is  if admin  can set up a  special  place  for  sufferers  to  register==  with  names contact numbers   and  what year  they had  their injection  with  Myodil

I am  also  considering   going  like Australia   and  taking legal action   so  will need  a  lawyer  who  can  do it  pro-rata 

 

or sufferers  can  contact me 

 

 I  will need  your help and input 

 

Re: What  i am wanting is  if admin  can set up a  special  place  for  sufferers  to  register==  with  names contact numbers

 

I have set up the following members group

 

Myodil Group

 

Visitors/Guests should "Create Account" and once their members account is activated they can contact an administrator (by Personal Messenger) and request to be placed into the Myodil Group.

 

Please note: Names and contact details can then be provided to John Huntley (Gaffa09) using the Personal Messenger.


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"If everybody is thinking alike, then somebody is not thinking." - Gen. George S. Patton Jr.


#36 gaffa09

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Posted 10 October 2015 - 10:36 AM

http://www.practical...g-arachnoiditis


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#37 gaffa09

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Posted 10 October 2015 - 11:31 AM

http://thomas.loc.go...r103:E18MY3-86:


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#38 gaffa09

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Posted 10 October 2015 - 11:34 AM

Class action to be launched against Myodil manufacturer

Thursday, 30 June , 2005  18:35:28

Reporter: Toni Hassan

 

MARK COLVIN: Hundreds of Australians believe they're facing a life of crippling pain because of one of medicine's most routine procedures – an X-ray. 

To help the doctor read their X-rays, their spines were injected with a contrast dye known as Myodil.

It was banned in some countries in the '40s and '50s, but went on being used in Australia until 1987. 

Sufferers from what's called Chemically Induced Adhesive Arachnoiditis say the medical profession has ignored them. 

The manufacturer of Myodil has in the past denied its product causes the condition. 

Sufferers want a public inquiry, and they're preparing a class action against the manufacturer and Australian hospitals where the dye was used.

Toni Hassan prepared this report for PM.

TONI HASSAN: Alan Wood was a happily married young man, aged 24, when he was admitted to the Royal Brisbane Hospital with a sore appendix. The doctors suspected a back problem as well. He says what was to be a straightforward set of tests ruined his life.

ALAN WOOD: I was just informed I was going to have a Myelogram, which I thought was going to be a simple procedure. They said they were going to take some fluid out of the spine and then inject some Myodil in as a contrast dye to see what was causing any problems in my spine. I was never aware I was going to end up with such severe complications.

TONI HASSAN: While the instructions issued with the dye suggested that it be removed following the X-ray, some of it, an oil-based chemical, was left inside Alan Wood's spine.

ALAN WOOD: The moment they put me in bed I was a raving lunatic.

TONI HASSAN: A raving lunatic, what do you mean?

ALAN WOOD: I was… well, the dye had apparently affected… hit brain and the headaches… had severe headaches. I was screaming, climbing the wall, and the whole body was just a mess.

TONI HASSAN: Did you have any idea why?

ALAN WOOD: I never had any idea why, and I never got an explanation why. My specialist came later in the afternoon, saw the condition I was in and that was when the alarm bells started. And then they were giving medication, and unfortunately to this day I have 25 years of medical records released to me, but the two days in particular, have never been released. They're lost.

TONI HASSAN: The year was 1970. 

Doctors at the time said Mr Wood's pain was a temporary reaction to treatment, but at home, new, more serious symptoms developed. Alan Wood lost vision and suffered paralysis. In the months that followed he travelled from specialist to specialist. Some discussed his pain as psychosomatic; others suggested all sorts of causes. At last he received a diagnosis that seemed to finger Myodil.

ALAN WOOD: I have had X-rays and scans done and it's revealed there's Myodil droplets, and two years ago I had it confirmed by a neurologist and a radiologist that this is what's causing the problems. I've been treated for multiple sclerosis, epilepsy, kidney problems, bladder problems – they'd never ever pinpointed what it was.

TONI HASSAN: Why was there a reluctance to, or was it just an inability to diagnose it?

ALAN WOOD: I think it's a reluctance. Doctors just don't want to tell you what it is. The radiologist sent the report back, she actually apologised to me, said yes, it's confirmed, you do have it.

TONI HASSAN: Why is there a reluctance do you think?

ALAN WOOD: Oh, I think mainly because way back from the '40s to the '78 it was literally a legal drug and they didn't want to reveal what was happening to people.

TONI HASSAN: PM has contacted Alan Wood's specialists who are now treating him for what's called Adhesive Arachnoiditis and they've supported this assessment. 

Mr Wood is one of hundreds of Australians planning legal action case against the global manufacturer of Myodil, GlaxoSmithKline, as well as Australian hospitals. 

GlaxoSmithKline has in the past denied its product causes arachnoiditis. 

PM today contacted Glaxo in Australia and put the allegation that Myodil has caused Arachnoiditis in some patients who underwent the special X-ray years ago, but the company, headquartered in Melbourne, declined to comment. 

In the United States, the UK, and in Australia six years ago, the company settled legal actions out of court with hundreds of sufferers on confidential terms. The company then said that sufferers had pre-existing back conditions.

David Baran is a barrister advising Sydney law firm, which is expected to launch the new Australian class action in September. Mr Baran says the case is strengthened by provisions under Trade Practices Act that protect consumers against defective goods. 

DAVID BARAN: The Trade Practices Act makes it abundantly clear that when a particular corporation in trade and commerce supplies a good, and that good is defective, then subject to very limited defences, the company has a very, very, very strict liability, and must pay for any loss or damage which flows as a result of that particular defective good being supplied. 

The defective good in this particular situation was a series of dyes used for particular neurological and radiological procedures, including the Myelogram. It was defective. 

We understand that at the time the company had enough information to know it would be defective, but even if it didn't, under our Trade Practices Act there is a liability and we propose to obtain maximum compensation for our clients as a result of what's concerned.

TONI HASSAN: Is the Federal Government also in your sights?

DAVID BARAN: The Federal Government at the moment has not been ruled out. Neither has the TGA in its manifestations, both at State and Federal levels.

TONI HASSAN: Myodil was banned in other countries as early as the 1940s, years before Australia stopped its use. However, allegations the product is unsafe and causes Arachnoiditis have never been tested in an Australian court of law. 

Marcus Stoodley is with the Department of Neurosurgery at the Prince of Wales Hospital in Sydney. Dr Stoodley says it's now medically accepted that Myodil is associated with the subsequent development of Arachnoiditis, particularly when the dye is left inside the spine after X-rays have been taken.

MARCUS STOODLEY: The modern contrast agents are dissolved in a water based fluid. The technology has evolved. 

I mean, Myodil was the state of the art; it was an oil-based fluid. And when that contrast agent was used to obtain X-rays of the nerves in the spine, part of the technique was to remove the contrast agent at the end of the procedure, and that's not always technically possible. And so, particularly in some patients where there was some of that oil-based contrast medium left in the spine, that caused ongoing inflammation.

TONI HASSAN: Arachnoiditis sufferers also want a national public inquiry, concerned the drug regulator and State and Federal governments did not do enough to protect patients. 

The Therapeutic Goods Administration has told PM that there was no national regulator when the contrast dye was first used in Australia and that Myodil was the best available product for assessing severe back conditions at the time, but the spokeswoman adds that doctors did not always heed the product's warnings and take proper precautions. 

Correspondence to Arachnoiditis sufferers obtained by this program show that the Commonwealth Health Department on behalf of the Minister has already said no to an Inquiry, observing that the incidence of the condition following use of the dye is uncommon, too uncommon to warrant an investigation.

In the meantime, Alan Wood and others like him, manage their condition in the hope of one day they'll be proven right and compensated.

ALAN WOOD: It is a struggle, because each day you wake up and you have to get up and get yourself mobilised. Your body is just a mess. 

I mean in my instance, my bladder, my bowel has gone I have to self-catheter three times a day. It is a struggle to stand up, a struggle to walk. Even 12 months ago I had to be retrained how to talk and eat because the brain isn't telling me how to talk and eat properly.

MARK COLVIN: Alan Wood ending Toni Hassan's report.
 

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#39 gaffa09

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Posted 10 October 2015 - 12:29 PM

So  where  does  this leave  us in NewZealand

 

 First  on the  list   is  the  Drug  companies  one being  Glaxo==   Kodak Eastmen  who  gave  the recipe  to Glaxo

 

Doctors   that  are not  trained or  no  nothing  about  arachnoiditis Myodil  Pantapaque 

 

Specialist   that  don't  know  or  don't  want  to know  for  what ever  reason   Question Mark

 

Government    that may be  shutting   this  down  because  of money   that it is  going  to cost

 

Finally  ACC  covering up  so  they  don't have  to  payout ==  in 1972  Government  passed a law  that  took away  our  rights  to sue

 

 For  overseas  members  or  guests  ACC  is  a  government  run or  controlled   insurance   company   where ACC  run  and control all accidents  or  medical misadventure issues  and  claims  ACC has  a  bank balance of billions 

 

Yet  there  is  enough evidence  to  back  up  our  claim  through  the  whole  world 

 

 Some  specialist  do  say possible arachnoditis   which is not  good  enough  for  ACC

 

MRI  scans  are often ordered  but  limited only  == question mark  again

 

 Then   there is  the sufferers  that have  this  poison  in  the  brain  or  head  causing  major problems  {  ignored }  no payout  from ACC

 

 This is  what  this  site  is  for    to expose  and  to  inform   sufferers

 

Finally  it  can take  up to 20 years or more   to show  up  or  for  you  to find out   that  you may have  this  crippling  disease

 

 It is  said  that  it  is  worse than  cancer    


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#40 gaffa09

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Posted 11 October 2015 - 12:01 PM

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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