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#1 gaffa09

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Posted 30 March 2015 - 04:06 PM

People  that have been injected  with Myodil Pantopaque causing  arachnoiditis   can contact   Parliament   something  is  starting  up i believe

There are other  drugs that causing  arachnoiditis  as  well as  spinal  trauma i believe 

 

barbara.stewart@parliament.govt.nz


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#2 gaffa09

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Posted 09 April 2015 - 05:13 PM

New Zealand Ministry of Health Report on Adhesive Arachnioditis... 16-8-2002


The following report was commissioned by the
New Zealand Ministry of Health.
Ministry input into the development of the report
was received from Mr Stephen Lungley and Dr Gillian Durham.

Supplementary Observations by Charles V. Burton, M.D.
Editor, Burton Report


This report, by Peter Day and associates at the Christchurch School of
Medicine, prepared under the auspices of the New Zealand Health Technology
Assessment Clearing House, is a landmark document. This is the first time, in
a century of global medical practice, that any government agency, in any
country, has commissioned a report on this important subject.

The people of New Zealand, The New Zealand Ministry of Health and the
Christchurch School of Medicine are to be complimented for having taken on
this difficult challenge.

Any unbiased review of the subject of arachnoiditis is a difficult task because
of the paucity of prior hard science on the subject. Part of this problem has
been a lack of awareness on the part of the medical profession in general as
well as some of the medical reporting which has reflected hidden agendas
and conflicts of interest not made apparent to their readers. The foundation
for legitimate health care planning is well-performed incidence and
prevalence studies and data. Such have never yet been developed for this
disease entity.

In a manner similar to that demonstrated by the tobacco industry, there has
been an expenditure of many millions of dollars intended to obfuscate and
provide "damage control" by the manufacturers of oil mydogram substances
to thwart their being held responsible, in the legal arena, for their
transgressions against the public. This is also an important part of the
history of the arachnoiditis saga. Today, many of the leading medical
journals require full disclosure, by authors, of any real or potential conflicts
of interest- These requirements were not in place when the literature
reviewed by Day and associates was published.

Day and associates accurately point out the many limitations of the
information they reviewed but also make the point that this information base
"can produce valid results".

How "rare" is clinically significant adhesive arachnoiditis?

It has become clear that every person who has ever had a oil mydogram (i.e.
lipiodol, pantopaque or myodil) has been left with permanent scarring of
their pia-arachnoid membranes and some related impairment of
cerebrospinal fluid production. From the 1940s to the 1980s there were
approximately 1 million oil myetograms performed each year throughout the
world. Scarring of the meninges secondary to exposure to these foreign body
substances occurred in every single case. How many of these situations
progressed to the stage of advanced "chronic adhesive arachnoiditis" is
simply not known. The actual number of cases is which this inflammatory
process ascended up the spine to the brain producing death is also not
known. Sensitivity to inflammation is now known to be a complex process
involving issues such as the individual's own immunotogic makeup.

It is readily apparent that although prevalence data is lacking the numbers of
those afflicted with meningeal scarring is quite high. What then is the
incidence of those individuals from this group who have become disabled by
this condition (referred to as:("clinically significant adhesive arachnoiditis"?)
What is "rare"? Its meaning is different to each beholder. Long has
estimated that 1 of those with adhesive arachnoiditis are "clinically
significant". This editor believes that 5 is a more accurate estimate.
Why is the prevalence of chronic adhesive arachnoiditis so high and clinically
significant adhesive arachnoiditis so low? The answer to this enigma may
very well lie in the remarkable ability of the human body to successfully deal
with insult and injury if the progression of adversity is sufficiently slow. This
is particularly true of the nervous system. This means that if the progression
of an inflammatory process is sufficiently slow the nerves are then allowed to
have the opportunity of surviving in their function despite progressive
encapsulation with scar, progressive loss of vascular supply and progressive
decrease in nutrition normally supplied by the surrounding cerebro-spinal
fluid. This also means that if the nerves are not allowed to have the
opportunity of accommodating they then signal their distress to the brain by
transmitting constant nociceptive information. The nature of the resulting
regional complex pain disorder is very often totally disabling to the
individual.

This also means that many who have the scarring and are asymptomatic
exist in a precarious state. Additional insult can, in these cases, upset the
balance producing decompensation and associated clinically evident
problems. This type of situation is well known in medicine where large,
benign, brain tumors progressively enlarge over many years and a minor
incident (i.e. being struck in the head with a soccer ball) causes
decompensation, unconsciousness, and even death. In the adhesive
arachnoiditis cases the additional insult can be another myelogram, trauma
such as a motor vehicle accident, or even an additional spinal surgery.
It is interesting to observe that clinically significant "chronic adhesive
arachnoiditis" may be infrequent, or even "rare", compared to the huge
reservoir of existing cases. But it is also important to point out that even if
these individuals appear normal they live with a "sword hanging over their
heads" and are typically unaware of this liability. It is also important to
recognize that even if there is no apparent clinical problem significant bodily
injury has occurred. This is a situation similar to the "post-polio syndrome"
where individuals afflicted with poliomyelitis at a eariy age loose many of
their spinal neurons to the viral infection. Many individuals appear to recover
completely and clinical problems may only become evident later in life when
the paucity of remaining neurons is diminished further by the process of
aging, are no longer able to meet the needs of the body.

If it is a "rare" entity why should New Zealand, and the rest of
the world, be concerned with "clinically significant adhesive
arachnoiditis"?

There are few disease processes more cruel and disabling than adhesive
arachnoiditis when it is "clinically significant". The nature of the constant
pain is such that it prevents NORMAL ACTIVITY, INTELLECTUAL PURSUITS and SLEEP.
Adhesive arachnoiditis does not affect longevity and sufferers do not have the
relative blessing of the limited life expectancy afforded by terminal cancer.

These individuals are non-productive and require long-term supportive care.

It would have been nice to see that with the phasing out of oil myelography
in the early 1980s that the issue of adhesive arachnoiditis would have
become something of only historic interest- This has not been the case- The
advent of Epidural Steroid Injection as a Primary Treatment for Back Pain has
created new populations of sufferers. How rare is this? Once again data on
incidence and prevalence do not exist. In the United States the most reliable
data on incidence are the number of physicians being brought to court by
their patients. This sad state of affairs seems to reflect only ignorance on the
part of physicians and their patients as epidural steroid administration can
(and should be) a safe procedure performed with appropriate INFORMED
CONSENT.

What needs to be done?

As correctly noted by Day and associates scientific study and further
assessment of this disease entity are required. The most important role of
this report, in my opinion, is being a first step in promoting awareness. In
1968 ago a physician wrote a letter to the editor of the New England Journal
of Medicine noting that whenever he ate at a Chinese restaurant he would
experience symptoms similar to those of a heart attack. Before long there
were similar experiences shared by a multitude of other physicians. The
entity became referred to as "the Chinese restaurant syndrome".
Investigation finally determined that a hypet sensitivity to monosodhnn
glutamate (NSG) and high salt content in the food appeared to be the
etiology of this entity.

Only with increased awareness will physicians and patients begin to suspect,
and then identify adhesive arachnoiditis. It should not be that a popular
treatment for low back pain be allowed to create devastating disease for the
patient. How much is the prevention of this sad patient experience worth to a
concerned health care system?

The importance of awareness

In 1926 French neurologists Foix and Alajouanine published the description
of a pathologic entity producing adhesions, spinal cord degeneration and
paralysis. We now appreciate that the Poix-AIajouanine syndrome probably
represented a congenital arterio-venous malformation of the spinal cord
associated with small intermittent bleeds producing local adhesive
arachnoiditis, spinal cord restriction and impairment of blood supply
producing mydomalacia, cavitation and neurologic problems. This appears to
have been the first medical description of adhesive arachnoiditis. 
Is this something of only historic interest?

Recently the editor has become aware of a number of cases in which epidural
injections for the purpose of analgesia were used to assist in childbirth in
young and previously healthy women. Following these injections the women
developed severe, and in some cases permanent, neurologic problems.
Subsequent imaging studies documented thoracic adhesive arachnoiditis.
Although these were standard epidural injections the anesthesiologists
involved have been accused of producing the problem. From reviewing the
MRI studies I am convinced that these situations represented long-standing
cases of clinically insignificant Fbix-Alajouanine syndrome activated by the
epidural injection (probably the included epinephrine) and thus becoming
"clinically significant".

How many anesthesiologists know about the Foix-Alajouanine syndrome,
adhesive arachnoiditis, or the dangers of injecting foreign body substances
into the subarachnoid space? This knowledge is truly a "rare" situation.

Appreciation to the New Zealand Ministry of Health

The literature review by Day and associates is a really important
contribution, it is also something, which should have been done a long time
ago by Health agencies in the United States or England. New Zealand clearly
has less resource available than these world neighbors. The fact that
concerned citizens were able to reach the responsive ears of government to
commission a valuable first-step technology assessment is exemplary and
worthy of acknowledgement. The editor's highest compliments and personal
appreciation are extended to all involved.

And our highest compliments to you Doctor Burton for being there for us.

....................................................................................................
Big Question here is... 
Why are these proceedures still being done, when it is clear the damage it does.?
ACC has accepted some cases of Chemically Induced Adhesive Arachnoiditis,
Under Med Mis-adventure/ Med Mis-hap...
Gaffa09 clearly has this problem, I see see effects of, this on a regular basis.
and it was he who has to date exposed and produced most of the info that has assisted others in their claims...
SO WHY WILL ACC NOT ACCEPT HIS CLAIM IN THIS...???
They have "closed" his file on this...
Read the rest of whats here on this subject....

From The British House of Commons.

 


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#3 gaffa09

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Posted 09 April 2015 - 05:20 PM

Posted 05 February 2006 - 03:57 PM

This is what I have to date re my file and also what I have on file 

Myodil injected 6cc 1979 OP after.heard my own screems come back at me trouble ever since
Myodil also injected 1987 6cc 

MR Doc Russel Worth Wellington { Scum bag,}

For 6 months after coming out of hospital complained to him in what was happening In a confidence document to ACC,he called me a malingerer and so on,
Through my Lawyer in the 1990s wrote to Russel Worth for full copies of my files , This was not carried out , Letter from Russell worth , statement ,
Have send files for vetting and after vetting you can have the rest.,
About same time found out that MR Russell Worth was on the board of the ACC medical team, {Ho dearie dearie me }
Letter from state insurance re ACC Mr Huntleys claim 
Also in 2 separate letters to my lawyer has admitted that Myodil is a major problem but tried to pull the statue of limitations saying this was out of time ,Have copies ,

Symptoms, as was in hospitals , HAVE ALL WELLINGTON hospital notes
Dizzy spells , massive headache, Blackouts , unbalanced , electric shocks through whole body , eye troubles , bad pain in neck like surgeons knife still there , middle spine now with trouble where needle went in can
t sleep and troubles with lower part of spine 12 years ago started with bowel, and bladder problems ,
Sex well that doesn't work well at all only some times if i am lucky 
In 3 weeks after coming out of hospital lost wife, now left with 5 children ,
Fell down steps twice due to blackout , dizzy spells on record more trouble .Muscle spasms
Can
t peel potatoes cant walk properly couldnt go to toilet with out massive pain ,
Taken off ACC April 1980 By Russel Worth who was instructed by ACC Mr Otterway .
Doc Hunters report, dated 21st August 1981 covers all 
Doc Hornabrooks report made promises to invest ergate myodil { didn
t happen}
==================================================
Years went by pain now is in legs, feet ,toes, fingers, arms, hospitalize for heart condition , stroke like symptoms, this all about and up too 1985 ,reinstated back on ACC april 1985 ,
Myelogram napier 17th of July 1985 carried out by Mr Shipp the same one and only, that did the first one in 1979 under Russell Worth 
Residual myodil also found in base of spine 
Letters from Mr Gale Curtis , Orthopaedic surgeon
Letter dated 1st sept 1988 
In OCT 1987 MUA of spine
50% restricted 

Hospital Taumarunui 26 July 1989 heart attack systems dizziness, upper limbs feel weak , off balance,
At this time now I feel as if my head won
t stay on my shoulders .
Taumarunui Hospital date 31st Oct 1989 another fall damaged ribs 
Waikato Hospital dated 2 nov 1987 Diagnosis Chronic neck bilateral arm pain
Waikato Hospital 21st Feb 1990 cervical instability to be accepted.
Gale Curtis march 21st 1990 getting back to work is zero A two level anterior interbody arthrodesis could be undertaken
Dr G.P. Miles approved by ACC damaging report 
Wakefield Medical centre Dr Graham Martin report covers above .
12 May report disability 30%, and comments about Russel Worth, {What a pack s... }
Now in this time I have had another 6cc of myodil injected by gale Curtis Napier hospital and another Op= fusions of neck bone taken from hip 
Dr Ian Macpherson report out come of more surgery not good.
22nd June 1993 letter from Dr little my now GP,
Myodil in brain after he sent me to Wanganui hospital thought I had tumours on brain... The real start of investigating myodil 
1994 now come mood swings, irritable, angry, depressed very tired
Progressive medical imaging dated 25th July 1994 marked degenerative changers c section and l section 
Letter to ACC from russell Worth 27th July 1994 {go you }
Bakes report 28th July 1994 back up spinal problems 
Massey University 1st August 1994 re now mental health good report for me .
4th of August refusal to supply Russell Worth info from my x-rays and files ,
Russells Worths report 22nd of August 1994 
Admission of problems with myodil pulls the statute of limitations on us 
Damming report on both medical and myodil. Have copies 
Wanganui Hospital 12 th Sept Why is myodil used , And in other countries .
11th Oct wanganui hospital a limited CT scan preformed Question why a limited ? Paid for by ACC
20th Oct 1994 from Russell Worth in his words 
There is no doubt that myodil in the subarachnoid space causes Arachnoiditis.
He goes on. Mr Huntleys problem is related to chronic pain in his arms 
This may be due to Mechanical instability or to arachnoiditis of the cervical spinal nerves
30th of dec 1994 visual fields test for eyes effected by myodil I failed tests 
2 OP on eyes to follow paid for by ACC won
t accept F. Howes FCS {SA }<FRCS {ED}> FRCOphth report is that good enough .
6th april 1995 bakers report 5 pages talks about mydil, and also spondylosis
5th of OCT Russell Worth to lawyer I have had the whole file vetted by Jenny Gibson of the medical protection society .
17th Oct 1995 Hornabrook report 
In report statement re myodil
I will be happy to try and help clarify the issue { THEN HE WENT AND 
RETIRED)
5th March report by Mr F Howes eye surgeon this may be related to a possible arachnoiditis .

Reports from Gil Newburn 1997
Grant gillett not a good report also lost x-rays also I cost his boss his job ,
.
Then comes the asshole Dr Alastair K Wilson ACC assessor need I say more 
30th Nov 1999 Whangarei hospital , Black out causing fracture of L1 
Another black out 25th May 2001 hospital report split head open repaired and sent home 
Ho yes ACC wouldn
t pay for st johns ambulance,
Have all documents 
15th Oct 2001 Northland health pick up severe sloping sensorineural hearing loss in both ears .
Gee that most come from the yelling ACC have done .
In inquiring this may have stemmed from the days in the fire service .
23rd Aug 2002 from Vision care in short unusually lower blood pressure in head possible cause Myodil reports of arachnoiditis secondary to the use of myodil
But my doctor is treating me for high blood pressure 
26th of sept 2003 Burtons health care ACC wanted me to go to this what a waste of time and money By the way her bill was $1910.00 yet they cant pay me what I am entitled too.
I also forgot to say that ACC spent big money on me investigating me back in the mid 1990s 
Nerve conduction tests which I have had also not carried out by world standards 
I have also over 3000 pages on Myodil in one lot alone Half this amount again from Aussie, some from Canada. Some from Dr Burton, How the hell do I put all this up on site ,
Letters from Glaxo, health Dept, 
In short ACC opinion is that it is all in my head , (Yeah right... 6cc of Myodil.)

You judge , 

This is only some of the medical files I have I would be writing all day ,

vvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvv

 

today i have had  to live  with them all  and  adjust  to them   the pain is  what gets me , unbalanced  dizzy  spells  electric  shocks   and  my head out in space  

 

====================================================================================

 

 

CERVICAL SPINE : Minor ,diApiii*at       c Aitiggsysitlir pitisC6/7 regi.

only. The intervertebral               eP-peier

LUMBAR SPINE: The appearance of the vertebral bodies and disc spaces ar normal.

19.7.79 CHEST: No abnormality is seen.-

PELVIS: No abnormality is seen.

CERVICAL & LUMBAR MYELOGRAM: Under L .A. 6cc of' Myodil was placed in the lum             sacral spine and the lumbar spine was screened. The appearances


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#4 gaffa09

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Posted 10 April 2015 - 10:40 AM

Re: New Zealand Ministry of Health Report on Adhesive

03-Nov-07 13:38:35

House of Commons Hansard Debates for 19 May 2 ... 
Page3 of 3 
be made and dealt in a non-legal manner where appropriate and that the rights of the individuals are protected for as long as necessary--in the circumstances described by my hon. Friend, for example. 
Mr. Collins: I have a couple of brief points to make. My hon. Friend the Member for Runoymede and Weybridge (Mr. Hammond) and the hon. Member for Ellesmere Port and Neston (Mr. Miller) have made some important remarks about new clause 7, which was tabled by the hon. Member for Hendon (Mr. Dismore). As I listened to the hon. Gentleman's speech, however, 1 found myself agreeing with him, which I have not done for three years: he made some good points. 
Although the hon. Member for Ellesmere Port and Neston referred to a constituency case that led him to one conclusion--it is always right to bear in mind that hard 
19 May 2000: Column 587 
cases can make bad law--I was reminded of a constituency case that leads me to believe that the points made by the hon. Member for Hendon need to be taken seriously, even if new clause 7 may not be perfect. 
My constituency case is directly relevant to determining whether the time limit should constitute an absolute three-year cut-off after a practitioner has left service or whether, as the hon. Member for Hendon said, the opportunities available in common law should apply enabling the victim to take action after the information has become available to them. 

More than 20 years ago, a chemical called Myodil was injected into my constituent's spine. Many of those who have had such an injection have subsequently suffered from adhe~ve arachnoiditis--a !errible condition that has rightly been described as involving all the pain of terminal cancer without the prospect of relief.,My constituent was not tolOtfiat that was t~ cause of her back problem for 20 years; successive medical practitioners said that it was associated with the condition of her spine. By obtaining copies of the medical notes, she found out that, as far back as the early 1970s, doctors had written that she was suffering from adhesive arachnoiditis, but for nearly two decades they did not tell her that that was the cause of the excruciating pain in which she has lived. As the hon. Member for Hendon said, someone in those circumstances would have the right to take legal action, but my constituent has repeatedly made it clear that she is not interested in seeking large sums of compensation. She realises that nothing can be done to end that appalling pain, which has completed destroyed her life and means that she can only walk with extreme difficulty. The live that she previously led as an active tennis player has been ended. She wants an investigation into what occurred to be undertaken and published, which would be a more proper role for the ombudsman. It would be difficult for an ombudsman's inquiry to go back over such a period, but I would not want us lightly to pass a law that would make that impossible in all circumstances. 
Next Section 
Index 
Home Page 

http://www.parliament.the-stationery-of … /00-05.htm


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#5 gaffa09

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Posted 10 April 2015 - 10:43 AM

#4    gaffa09

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Posted 05 February 2006 - 03:57 PM

This is what I have to date re my file and also what I have on file 

Myodil injected 6cc 1979 OP after.heard my own screems come back at me trouble ever since
Myodil also injected 1987 6cc 

MR Doc Russel Worth Wellington { Scum bag,}

For 6 months after coming out of hospital complained to him in what was happening In a confidence document to ACC,he called me a malingerer and so on,
Through my Lawyer in the 1990s wrote to Russel Worth for full copies of my files , This was not carried out , Letter from Russell worth , statement ,
Have send files for vetting and after vetting you can have the rest.,
About same time found out that MR Russell Worth was on the board of the ACC medical team, {Ho dearie dearie me }
Letter from state insurance re ACC Mr Huntleys claim 
Also in 2 separate letters to my lawyer has admitted that Myodil is a major problem but tried to pull the statue of limitations saying this was out of time ,Have copies ,

Symptoms, as was in hospitals , HAVE ALL WELLINGTON hospital notes
Dizzy spells , massive headache, Blackouts , unbalanced , electric shocks through whole body , eye troubles , bad pain in neck like surgeon’s knife still there , middle spine now with trouble where needle went in can
t sleep and troubles with lower part of spine 12 years ago started with bowel, and bladder problems ,
Sex well that doesn't work well at all only sometimes if i am lucky 
In 3 weeks after coming out of hospital lost wife, now left with 5 children ,
Fell down steps twice due to blackout , dizzy spells on record more trouble .Muscle spasms
Can
t peel potatoes cant walk properly couldnt go to toilet without massive pain ,
Taken off ACC April 1980 By Russel Worth who was instructed by ACC Mr Otterway .
Doc Hunters report, dated 21st August 1981 covers all 
Doc Hornabrooks report made promises to invest ergate myodil { didn
t happen}
==================================================
Years went by pain now is in legs, feet ,toes, fingers, arms, hospitalize for heart condition , stroke like symptoms, this all about and up too 1985 ,reinstated back on ACC april 1985 ,
Myelogram Napier 17th of July 1985 carried out by Mr Shipp the same one and only, that did the first one in 1979 under Russell Worth 
Residual myodil also found in base of spine 
Letters from Mr Gale Curtis , Orthopaedic surgeon
Letter dated 1st sept 1988 
In OCT 1987 MUA of spine
50% restricted 

Hospital Taumarunui 26 July 1989 heart attack systems dizziness, upper limbs feel weak , off balance,
At this time now I feel as if my head won
t stay on my shoulders .
Taumarunui Hospital date 31st Oct 1989 another fall damaged ribs 
Waikato Hospital dated 2 nov 1987 Diagnosis Chronic neck bilateral arm pain
Waikato Hospital 21st Feb 1990 cervical instability to be accepted.
Gale Curtis march 21st 1990 getting back to work is zero A two level anterior interbody arthrodesis could be undertaken
Dr G.P. Miles approved by ACC damaging report 
Wakefield Medical centre Dr Graham Martin report covers above .
12 May report disability 30%, and comments about Russel Worth, {What a pack s... }
Now in this time I have had another 6cc of myodil injected by gale Curtis Napier hospital and another Op= fusions of neck bone taken from hip 
Dr Ian Macpherson report out come of more surgery not good.
22nd June 1993 letter from Dr little my now GP,
Myodil in brain after he sent me to Wanganui hospital thought I had tumours on brain... The real start of investigating myodil 
1994 now come mood swings, irritable, angry, depressed very tired
Progressive medical imaging dated 25th July 1994 marked degenerative changers c section and l section 
Letter to ACC from Russell Worth 27th July 1994 {go you }
Bakes report 28th July 1994 back up spinal problems 
Massey University 1st August 1994 re now mental health good report for me .
4th of August refusal to supply Russell Worth info from my x-rays and files ,
Russells Worths report 22nd of August 1994 
Admission of problems with myodil pulls the statute of limitations on us 
Damming report on both medical and myodil. Have copies 
Wanganui Hospital 12 th Sept Why is myodil used , And in other countries .
11th Oct wanganui hospital a limited CT scan preformed Question why a limited ? Paid for by ACC
20th Oct 1994 from Russell Worth in his words 
There is no doubt that myodil in the subarachnoid space causes Arachnoiditis.
He goes on. Mr Huntleys problem is related to chronic pain in his arms 
This may be due to Mechanical instability or to arachnoiditis of the cervical spinal nerves
30th of dec 1994 visual fields test for eyes effected by myodil I failed tests 
2 OP on eyes to follow paid for by ACC won
t accept F. Howes FCS {SA }<FRCS {ED}> FRCOphth report is that good enough .
6th april 1995 bakers report 5 pages talks about mydil, and also spondylosis
5th of OCT Russell Worth to lawyer I have had the whole file vetted by Jenny Gibson of the medical protection society .
17th Oct 1995 Hornabrook report 
In report statement re myodil
I will be happy to try and help clarify the issue { THEN HE WENT AND 
RETIRED)
5th March report by Mr F Howes eye surgeon this may be related to a possible arachnoiditis .

Reports from Gil Newburn 1997
Grant gillett not a good report also lost x-rays also I cost his boss his job ,
.
Then comes the asshole Dr Alastair K Wilson ACC assessor need I say more 
30th Nov 1999 Whangarei hospital , Black out causing fracture of L1 
Another black out 25th May 2001 hospital report split head open repaired and sent home 
Ho yes ACC wouldn
t pay for st johns ambulance,
Have all documents 
15th Oct 2001 Northland health pick up severe sloping sensorineural hearing loss in both ears .
Gee that most come from the yelling ACC have done .
In inquiring this may have stemmed from the days in the fire service .
23rd Aug 2002 from Vision care in short unusually lower blood pressure in head possible cause Myodil reports of arachnoiditis secondary to the use of myodil
But my doctor is treating me for high blood pressure 
26th of sept 2003 Burtons health care ACC wanted me to go to this what a waste of time and money By the way her bill was $1910.00 yet they cant pay me what I am entitled too.
I also forgot to say that ACC spent big money on me investigating me back in the mid 1990s 
Nerve conduction tests which I have had also not carried out by world standards 
I have also over 3000 pages on Myodil in one lot alone Half this amount again from Aussie, some from Canada. Some from Dr Burton, How the hell do I put all this up on site ,
Letters from Glaxo, health Dept, 
In short ACC opinion is that it is all in my head , (Yeah right... 6cc of Myodil.)

You judge , 

This is only some of the medical files I have I would be writing all day ,

Vvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvv


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Posted 18 April 2015 - 09:31 AM

View how ACC treats Myodil Dye victims.

 

 
Some excellent investigative journalism from the 60 minutes team and Genevieve Westcot.
 
This was shown on TV in 1996, and still today the ACC are continuing to make life difficult for Myodil victims.
 
John Huntley, Carol Bampbell and a group of others speak about their experience
 
 
Please note: It's an old video and hasn't converted too well to youtube format.
 
4sbhih.jpg

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Posted 18 April 2015 - 09:52 AM

People  that have been injected  with Myodil  can contact   Parliament   something  is  starting  up i believe 

 

barbara.stewart@parliament.govt.nz

 

Are you able to tell us all where MP Barbara Stewart fits into all of this Gaffa09?

 

It's highly likely that the ACC would be watching/following your story Gaffa09 so why not seize the opportunity and ask them some questions.

 

They are most welcome to respond to all questions raised here (by you and other interested parties) on this thread for all to read. The user name - ACC - has been reserved for them.


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#8 gaffa09

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Posted 18 April 2015 - 12:02 PM

this  comes in  two parts

First Barbara  Stewart in  a member of parliament   with  NZ  first  who  has been  asked  to investigate

 also  the  60 minutes  program   that has been  put up  on  the link   the other name  is Campbell

 I started   the investigation back  in the  early  1990s after being injected   in the  spine in 1979 knowing after that  there  was something  terribly  wrong 

==============================================================================

Second

           If members of  parliament and  minister of ACC  or  ACC head office  are  reading   this  site   would   you please  inform    the  site  and  me   just what  you  are  doing  about   this  problem  which is  effecting  many   people in NZ

  there is  enough  data out  there  now   for  you  to  start  settling   the  sufferers ==inquries  Start  with   your ministry of  health==  the  house of  commons UK=  Charles  Burton and many others 

 

Now  to  top it  all off   please inform  Doctors  and   all medical profession  in  NZ as  they  know  nothing about   this   problem  and  the  effects  it has  on the  sufferers  and  there  family's 


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#9 Guest_aussie_redback_*

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Posted 21 May 2015 - 04:36 PM

Hi, its been awhile since I last posted but you may be interested in my link at wordpress the specific link you need is http://pantopaquemyodil.wordpress.com for further information you can reach me at ctensw@gmail.com oh, I also ask you to share for Pantopaque was also used in NZ

Derek

AussieRedback


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#10 gaffa09

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Posted 23 May 2015 - 04:02 PM

Hi Derek,

   This is  to all readers   I  have meet  Derek  some  years  back  spent  3 weeks   with him  in Aussie   Derek  knows  what  he is  talking  about   He has  a  wealth of  information==  Please   take  a look  at his  site  or  contact him

 

 John

 

jhuntley@xtra.co.nz


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#11 gaffa09

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Posted 01 September 2015 - 03:57 PM

http://www.theaword....catid=97:myodil

 

 

this is  well  worth  reading    3  pages then  go  to next on the bottom of  page  3  continue to next 


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#12 gaffa09

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Posted 13 September 2015 - 09:38 PM

Myodil Induced
Thursday, 17 March 2005 17:53
 

 

Myodil is a contrast agent used in a procedure known as MYELOGRAPHY. This involves visualisation of the spinal cord by the injection of contrast material into the subarachnoid space (ie. Into the spinal fluid) through a needle inserted into the back.

Myelography was first used in 1919, when air was injected to produce an air myelogram.

In 1922, an oil-based substance called Lipiodol was introduced. This was extremely toxic.

In 1923, Thorotrast came into use, but was radioactive, so carried high risk.

Iophendylate (Myodil in UK, Pantopaque in USA) was investigated as an alternative to lipiodol .

On the basis of only 2 animal experiments,(which both demonstrated significant toxicity), the new medium was first tested clinically on Nov. 1940.

It came into common usage in 1942 and went on to become the agent of choice between 1944 and 1972 in the UK.

However, at the same time as Myodil was coming into use, an eminent neurologist, Eric Oldberg, wrote a paper entitled "A Plea for Respect for the Tissues of the Central Nervous System" in which he warned of the dangers of introducing foreign material into the delicate areas around the spinal cord or brain.

He specifically mentioned Lipiodol as being "harmful" and stated:

"Anyone who has had perforce to dig about in the soggy mess which is the cauda equina of some unfortunate in whom five or ten cubic centimeters of lipiodol had been optimistically injected a year or two previously will understand this statement.

Not only is the original disease present, but a chronic, adhesive, chemical inflammation of the caudal roots has been engrafted upon it."

Nor was Myodil to turn out to be any less toxic. In 1950, a paper by Jaeger was published in a highly reputable journal. (Archives of Neurology and Psychiatry) Jaeger stated that

"ethyl iodophenylundecylate (Myodil) is extremely toxic", even  suggesting that it was

"much more irritating than similar emulsions..previously used."

Indeed, the use of Myodil in Sweden was discontinued in the early 50s.

In 1954, an article was published in The Journal of Bone and Joint Surgery , printed both in Boston and London:  it concluded that

"Pantopaque (Myodil)..and other iodized materials may contribute to severe and disabling arachnoiditis."

However, in the UK, use of this agent continued into the late 80s, well over 30 years later.

In 1977, The International Society for the Study of the Lumbar Spine met in Utrecht, Holland, and issued a Summary Statement on the use of myelographic agents;

this stated that radio-opaque myelographic media are known to be associated with recognised potential adverse events and called for a

"major reappraisal of the present medical and surgical approach to Lumbar disc disease."

The Society stressed that

"Emphasis must be placed on the most innocuous myelographic agents"

(by now, water-soluble agents were available) and also

"on the development of noninvasive means of diagnosing disease of the Lumbar spine."

In 1978, a paper by Johnson et al cited a 74% incidence of serious adverse effects due to Myodil.

A further important point is the necessity of aspirating (removing) the oil-based agent after the procedure; whilst some authors have argued that the trauma of the removal itself constitutes a hazard, nevertheless, most agree that aspiration is necessary to reduce the amount of agent left within the system.

One of the leading experts, Dr. Charles Burton of the Institute of Low Back and Neck care, wrote in 1999:

"non-traumatic removal should be accomplished as soon as possible." Burton estimates that 5% of cases of local inflammatory reaction to the dye "progress in intensity and scope to produce severe disability relating to direct nerve injury."

He goes on to remark that

"The clinical symptoms of this are a remarkably cruel and incapacitating type of pain."

Burton maintains that the use of Myodil has been responsible for serious health problems over the last 50 years.

Lynne McTaggart, in her book, "What Doctors Don't Tell You" published in 1999, wrote about the soft tissue and organ damage that could result from the use of Myodil.

This included anaphylactic (severe allergic reaction) shock, cardiac instability and disorders of kidney function. She also asserted that diabetic patients are at particular risk, with nearly 1 in 10 patients who underwent Myodil myelography ending up requiring dialysis.

Until the 1980s, nearly half a million myelograms were carried out each year in the United States.

Myodil remains in the central nervous system, either persisting as a thin film or encapsulated in scar  tissue.

This occurs anywhere along the cerebrospinal axis, (around the brain and spinal cord) and it is quite common for deposits of Myodil to collect in the basal cisterns at the base of the skull.

Being hyperbaric, gravity tends to draw Myodil remaining in the system after the myelogram downwards from other parts of the spine to collect in the lumbosacral area, i.e. the bottom third of the spinal cord.

This is the site for many of the resulting problems, although it should be noted that the chronic inflammatory reaction caused by Myodil, and the scarring it produces, can lead to secondary effects throughout the body.

When one considers that if Myodil is left in a styrofoam cup overnight, it will dissolve the cup, it is hardly surprising that serious toxicity arises in the body.

Indeed, Glaxo Wellcome issued guidance on its use as long as 20 years ago: to whit that glass syringes must be used as plastic syringes would be melted by the substance, and there has been incidences of spillages eating into laboratory floors.

One must also note that the water-soluble contrast agents which superseded Myodil, particularly after its withdrawal in 1987, are not without risks, including the risk of arachnoiditis.

During a survey of arachnoiditis patients in 1999, there were a number of cases of thyroid disease which occurred following myelography. This is quite feasibly linked to the dye, as most myelographic agents contain iodine.

 

Next >
 

 

 
 
 

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#13 gaffa09

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Posted 14 September 2015 - 09:34 AM

Legal Matters 
 
 
 Thursday, 17 March 2005 17:43  
 
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A court case against Glaxo, manufacturers of Myodil was successful in 1995.
However, this fails to help patients who are only now being diagnosed with arachnoiditis; this comes about for one of two reasons:
1.There has been a delay in onset of arachnoiditis: this can be up to 20 years after the procedure.
2.The patient has experienced symptoms for some time but these are only now being recognised as being due to arachnoiditis.(in some cases it appears that information has been witheld from the patient for many years).
3.The patient has experienced symptoms for some time but these are only now being recognised as being due to arachnoiditis.(in some cases it appears that information has been witheld from the patient for many years)
 
 
There are several factors at work here:
 
 
1.     Lack of awareness of the condition amongst the medical profession
2.     Lack of a definitive test
3.     MRI scans may not correlate well with the clinical picture. 
4.     Doctors' fear of litigation 
 
5.     Lack of awareness of the condition amongst the medical profession
6.     Lack of a definitive test
7.     MRI scans may not correlate well with the clinical picture. 
8.     Doctors' fear of litigation 
 
Currently there is a lawyer in Texas who thinks he may be able to bring cases from around the world to federal court in New Jersey.
 
It is to be hoped that this brings some chance of legal redress to victims whose arachnoiditis only came to light after the Glaxo case was resolved, but whose lives remain blighted by the condition.
 
They may have lost their job, and thus financial security, their dignity, independence, self-esteem, sometimes even their marriage..the strain of this intractable and intransigent illness can rob people of so many things in their lives.

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#14 gaffa09

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Posted 14 September 2015 - 09:37 AM

Future Aims
Thursday, 17 March 2005 17:36
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The Arachnoiditis Support Groups has a wider set of aims:

  1. RECOGNITION OF CASES OF ARACHNOIDITIS; including research into causative factors and the incidence of this so-called ?rare' condition
  2. PROACTIVE APPROACH TO TREATING ARACHNOIDITIS There is often under-treatment of chronic pain of all types and this is an important issue.
  3. PREVENTION OF FURTHER PREVENTABLE CASES: notably those due to epidural injections.

Whilst it is true that myelograms are rarely used nowadays, nevertheless, arachnoiditis patients are still suffering from the legacy of too little action too late.

We must, as Dr. Burton has said, learn from the past so as to avoid repeating history. The subarachnoid space is unforgiving: there is no room for manoeuvre.

It is (literally) the nerve centre of the body, and it remains unthinkable to place highly toxic agents into it.

This was demonstrated recently by the tragedy in which a Nottingham man was inadvertently injected with vincristine into the spinal fluid, with catastrophic results.

The whole issue of the use of ANY drug in the delicate subarachnoid space should be reconsidered, or must we wait another 60 years to implemetn Oldberg's apt warning in 1940:

"In any procedure undertaken involving it (the central nervous system), the axiom should be that the chances of benefit must preponderantly outweigh the harm of injury. When in doubt-don't risk it!" 

Dr Sarah Andreae-Jones MB BS
Patron of the ASG 2000


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#15 gaffa09

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Posted 14 September 2015 - 09:40 AM

Arachnoiditis
Thursday, 17 March 2005 17:49
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Arachnoiditis* is a chronic, insidious inflammatory condition, involving the arachnoid (middle) layer of the meninges, the membranes surrounding the spinal cord. It typically causes debilitating, persistent back and limb pain and a range of other problems.

This condition is substantially under-diagnosed and adverse drug reactions under-reported, so that the true incidence has yet to be established.

* Note that in the context of this article, arachnoiditis refers to clinically-significant adhesive arachnoiditis.

There are varying degrees of the condition arachnoiditis, the milder forms of which tend not to cause significant problems, whereas adhesive arachnoiditis is at the most severe end of the spectrum and is responsible for the condition outlined below.
 
I conducted a survey of 317 arachnoiditis sufferers globally in 1999 :the ten commonest symptoms were:

  1. Pain (100%): often widespread, but particularly in the back and legs
  2. Numbness/tingling (86%)
  3. Sleep disturbance (84%): most patients have great trouble getting more than a couple of hours' sleep a night.
  4. Weakness (82%):  some arachnoiditis patients need to use a wheelchair.
  5. Muscle cramps/twitches/spasms (81%): these can be extremely painful
  6. Stiffness (79%)
  7. Fatigue (76%)
  8. Joint pains (72%)
  9. Balance difficulties (70%)
  10. Loss of mobility (68%)

Other common symptoms seen in the typical case:

1. Bladder/bowel/sexual dysfunction(68%)
2. Increased sweating (63%);
3. Difficulty thinking clearly/Depression (63% /62%);
4. Heat intolerance(58%);
5. Dry eyes/mouth(58%) and
6. Weight gain (50%).

The pain tends to be intractable and resistant to treatment, being predominantly neurogenic(nerve related in origin), which is well recognised as an especially unpleasant pain which is difficult to treat.

One doctor has likened the pain to that experienced in cancer, but without the relief of death.

Indeed, some sufferers become suicidal due to the unrelenting pain and the neurological deficits they experience. (I have just heard of a case of a man in America who shot himself this week, being unable to carry on with the unrelenting pain).

There is a range of systemic symptoms which constitute a debilitating condition that severely impairs the sufferers' quality of life. Arachnoiditis is incurable and may be progressive in some cases.

The majority of sufferers need to use a variety of medication in an attempt to reduce the pain.

These include: narcotic drugs such as morphine ( a few patients need an internal morphine pump) in conjunction with adjuvant medication: usually a cocktail of drugs is necessary.

IN the 1999 survey only 3% of the respondents were on no medication and this was due to not being able to tolerate the strong medication due to side-effects or adverse reactions.

Naturally, high doses of these drugs may cause significant adverse effects such as sedation, cognitive impairment, nausea and vomiting, fluid retention etc.

Despite these drugs, all too often, patients still have to put up with constant pain every day of their lives. Rarely is the pain banished, usually it becomes an unwelcome part of everyday life.

It is important to note that sufferers experience a wide range of symptoms, the combination of which is extremely debilitating.

A significant number of arachnoiditis patients are substantially disabled due to their condition.

Myodil-induced arachnoiditis falls within the category of chemically-induced arachnoiditis; as such, it entails a syndrome : that is to say, symptoms relating to various body systems,  and is not simply a spinal condition.

There is in all probability, an autoimmune component, in which the body starts attacking itself, which arises as a reaction to the chemical insult form Myodil.

Some arachnoiditis patients develop conditions such as lupus and a few are diagnosed with MS in addition to arachnoiditis.

One must also remember that aside from the symptoms of arachnoiditis, often the patient also has to deal with symptoms arising from the spinal problem for which they underwent a myelogram in the first place: many have continuing spinal problems such as a recurrence of a slipped disc, osteoporosis (made even more likely due to the loss of mobility), spondylosis, osteoarthritis etc.

This always complicates the picture.

 

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#16 gaffa09

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Posted 14 September 2015 - 09:42 AM

I can't post  videos up  they are  damaging==  Still  working on it 


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#17 gaffa09

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Posted 17 September 2015 - 09:46 AM

The New Zealand Ministry of Health
Report on Arachnoiditis

 

 

On February 25, 2002 The New Zealand Ministry of Health released a report commissioned by the government to review the subject of arachnoiditis.  This report: Arachnoiditis: A brief summary of the literature was prepared by the Christchurch School of Medicine and Health Sciences, Christchurch, New Zealand staff headed by Peter Day and associates who have graciously allowed Burton Report® to make available a copy on Adobe .pdf format.  

 

Supplementary Observations by Charles V. Burton, M.D.
Editor, Burton Report®

This report, by Peter Day and associates at the Christchurch School of Medicine, prepared under the auspices of the New Zealand Health Technology Assessment Clearing House, is a landmark document. This is the first time, in a century of global medical practice, that any government agency, in any country, has commissioned a report on this important subject.

The people of New Zealand, The New Zealand Ministry of Health and the Christchurch School of Medicine are to be complimented for having taken on this difficult challenge.

Any unbiased review of the subject of arachnoiditis is a difficult task because of the paucity of prior hard science on the subject. Part of this problem has been a lack of awareness on the part of the medical profession in general as well as some of the medical reporting which has reflected hidden agendas and conflicts of interest not made apparent to their readers. The foundation for legitimate health care planning is well-performed incidence and prevalence studies and data. Such have never yet been developed for this disease entity.

In a manner similar to that demonstrated by the tobacco industry, there has been an expenditure of many millions of dollars intended to obfuscate and provide "damage control" by the manufacturers of oil myelogram substances to thwart their being held responsible, in the legal arena, for their transgressions against the public. This is also an important part of the history of the arachnoiditis saga. Today, many of the leading medical journals require full disclosure, by authors, of any real or potential conflicts of interest. These requirements were not in place when the literature reviewed by Day and associates was published.

Day and associates accurately point out the many limitations of the information they reviewed but also make the point that this information base "can produce valid results."

How "rare" is clinically significant adhesive arachnoiditis?

It has become clear that every person who has ever had a oil myelogram (i.e. lipiodol, pantopaque or myodil) has been left with permanent scarring of their pia-arachnoid membranes and some related impairment of cerebrospinal fluid production. From the 1940s to the 1980s there were approximately 1 million oil myelograms performed each year throughout the world. Scarring of the meninges secondary to exposure to these foreign body substances occurred in every single case. How many of these situations progressed to the stage of advanced "chronic adhesive arachnoiditis" is simply not known. The actual number of cases is which this inflammatory process ascended up the spine to the brain producing death is also not known. Sensitivity to inflammation is now known to a complex process involving issues such as the individual’s own immunologic makeup.

It is readily apparent that although prevalence data is lacking the numbers of those afflicted with meningeal scarring is quite high. What then is the incidence of those individuals from this group who have become disabled by this condition (referred to as:("clinically significant adhesive arachnoiditis")? What is "rare"? It’s meaning is different to each beholder. Long has estimated that 1% of those with adhesive arachnoiditis are "clinically significant."  This editor believes that 5% is a more accurate estimate.

Why is the prevalence of chronic adhesive arachnoiditis so high and clinically significant adhesive arachnoiditis so low? The answer to this enigma may very well lie in the remarkable ability of the human body to successfully deal with insult and injury if the progression of adversity is sufficiently slow. This is particularly true of the nervous system. This means that if the progression of an inflammatory process is sufficiently slow the nerves are then allowed to have the opportunity of surviving in their function despite progressive encapsulation with scar, progressive loss of vascular supply and progressive decrease in nutrition normally supplied by the surrounding cerebro-spinal fluid. This also means that if the nerves are not allowed to have the opportunity of accommodating they then signal their distress to the brain by transmitting constant nociceptive information. The nature of the resulting regional complex pain disorder is very often totally disabling to the individual.

This also means that many who have the scarring and are asymptomatic exist in a precarious state. Additional insult can, in these cases, upset the balance producing decompensation and associated clinically evident problems. This type of situation is well known in medicine where large, benign, brain tumors progressively enlarge over many years and a minor incident (i.e. being struck in the head with a soccer ball) causes decompensation, unconsciousness, and even death. In the adhesive arachnoiditis cases the additional insult can be another myelogram, trauma such as a motor vehicle accident, or even an additional spinal surgery.

It is interesting to observe that clinically significant "chronic adhesive arachnoiditis" may be infrequent, or even "rare", compared to the huge reservoir of existing cases. But it is also important to point out that even if these individuals appear normal they live with a "sword hanging over their heads" and are typically unaware of this liability. It is also important to recognize that even if there is no apparent clinical problem significant bodily injury has occurred. This is a situation similar to the "post-polio syndrome" where individuals afflicted with poliomyelitis at a early age loose many of their spinal neurons to the viral infection. Many individuals appear to recover completely and clinical problems may only become evident later in life when the paucity of remaining neurons is diminished further by the process of aging, are no longer able to meet the needs of the body.

If it is a "rare" entity why should New Zealand, and the rest of the world, be concerned with "clinically significant adhesive arachnoiditis"?

There are few disease processes more cruel and disabling than adhesive arachnoiditis when it is "clinically significant." The nature of the constant pain is such that it prevents normal activity, intellectual pursuits and sleep. Adhesive arachnoiditis does not affect longevity and sufferers do not the relative blessing of the limited life expectancy afforded by terminal cancer. These individual are non-productive and require long-term supportive care.

It would have been nice to see that with the phasing out of oil myelography in the early 1980s that the issue of adhesive arachnoiditis would have become something of only historic interest. This has not been the case. The advent of epidural steroid injection as a primary treatment for back pain has created new populations of sufferers. How rare is this? Once again data on incidence and prevalence do not exist. In the United States he most reliable data on incidence are the number of physicians being brought to court by their patients. This sad state of affairs seems to reflect only ignorance on the part of physicians and their patients as epidural steroid administration can (and should be) a safe procedure performed with appropriate informed consent.


What needs to be done?

As correctly noted by Day and associates scientific study and further assessment of this disease entity are required. The most important role of this report, in my opinion, is being a first step in promoting awareness. In 1968 ago a physician wrote a letter to the editor of the New England Journal of Medicine noting that whenever he ate at a Chinese restaurant he would experience symptoms similar to those of a heart attack. Before long there were similar experiences shared by a multitude of other physicians. The entity became referred to as "the Chinese restaurant syndrome." Investigation finally determined that a hypersensitivity to monosodium glutamate (MSG) and high salt content in the food appeared to be the etiology of this entity.

Only with increased awareness will physicians and patients begin to suspect, and then identify adhesive arachnoiditis. It should not be that a popular treatment for low back pain be allowed to create devastating disease for the patient. How much is the prevention of this sad patient experience worth to a concerned health care system?

The importance of awareness

In 1926 French neurologists Foix and Alajouanine published the description of a pathologic entity producing adhesions, spinal cord degeneration and paralysis. We now appreciate that the Foix-Alajouanine syndrome probably represented a congenital arterio-venous malformation of the spinal cord associated with small intermittent bleeds producing local adhesive arachnoiditis, spinal cord restriction and impairment of blood supply producing myelomalacia, cavitation and neurologic problems. This appears to have been the first medical description of adhesive arachnoiditis. If this something of only historic interest?

Recently the editor has become aware of a number of cases in which epidural injections for the purpose of analgesia were used to assist in childbirth in young and previously healthy women. Following these injections the women developed severe, and in some cases permanent, neurologic problems. Subsequent imaging studies documented thoracic adhesive arachnoiditis. Although these were standard epidural injections the anesthesiologists involved have been accused of producing the problem. From reviewing the MRI studies I am convinced that these situations represented long-standing cases of clinically insignificant Foix-Alajouanine syndrome activated by the epidural injection (probably the included epinephrine) and thus becoming "clinically significant."

How many anesthesiologists know about the Foix-Alajouanine syndrome, adhesive arachnoiditis, or the dangers of injecting foreign body substances into the subarachnoid space? This knowledge is truly a "rare" situation.

Appreciation to the New Zealand Ministry of Health

The literature review by Day and associates is a really important contribution, it is also something, which should have been done a long time ago by Health agencies in the United States or England. New Zealand clearly has less resource available than these world neighbors. The fact that concerned citizens were able to reach the responsive ears of government to commission a valuable first-step technology assessment is exemplary and worthy of acknowledgement. The editor's highest compliments and personal appreciation are extended to all involved.

 

Supplementary Observations by Sarah Smith, M.D.

COMMENTARY ON THE 2001 NZHTA REPORT ON ARACHNOIDITIS

As a campaigner who has been trying to raise awareness of adhesive arachnoiditis in both the medical and public arenas, I welcome this report as an important step forward in helping to further this aim. Being the first of its kind, the report is groundbreaking and I hope that it will occasion further such work in other countries. Arachnoiditis is, after all, a global issue.

One of the chief aspects of adhesive arachnoiditis has been appropriately highlighted by the report: a continuing dearth of cohesive medical literature, in particular with regard to the prognosis of this incurable condition. As the report remarks, it has a heavy "reliance on the work of several key authors" which denotes the very limited number of experts within the field. The authors go on to suggest that this very problem may be a hindrance to future work on this condition.

Peter Day and his associates have also identified and elaborated on a number of other highly important issues which include:

1) difficulties in terminology
2) lack of correlation between medical evidence and symptomatology
3) statistics of incidence and prevalence

These three issues have already been discussed at length by experts such as Dr. Charles Burton, who has recently reiterated them in his Supplementary Observations on this report. (available at:
               http://www.burtonrep...landReport.htm)

He believes that around 5% of people with adhesive arachnoiditis have a "clinically significant" condition. He ascribes the low prevalence of clinically significant adhesive arachnoiditis to the ability of the nervous system to compensate for insults, provided that these are not too frequent or numerous. However, he goes on to make a further, vital point: "This also means that many who have the scarring and are asymptomatic exist in a precarious state"; he notes that the "huge reservoir of existing cases" involves individuals who "appear normal" but live essentially with the sword of Damocles hanging over them, albeit they remain unaware of this. Of course, medical professionals also remain ignorant of the time bomb, and in the course of instituting further invasive intervention, set the clock ticking.

Until or unless clinicians develop an index of suspicion of adhesive arachnoiditis, based upon a patient’s history of risk factor(s) for the condition, then those at risk are unlikely to be identified : prevention of an irrevocable situation will remain impossible and furthermore, recognition of cases of the condition will continue to be patchy.

This lack of awareness is of prime importance in the continuing battle against arachnoiditis. The Day report does clarify for us the lamentable lack of progress in this matter. Both the NZHTA report and Dr. Burton's observations thereon note that statistics in incidence and prevalence of adhesive arachnoiditis remain lacking. This is something of a vicious circle: lack of awareness and perception by the medical profession of adhesive arachnoiditis as rare inevitably precludes routine consideration of the condition in differential diagnosis and the resultant low rate of diagnosis gives a feedback loop of low statistics that 'confirm' the notion of the condition's rarity. In addition, it is not considered to be a sufficiently common risk to warrant mandatory warning during discussion of consent for invasive spinal procedures. As the Day report comments, quite how we are to resolve this conundrum is far from clear at this stage.

On more specific issues: the NZHTA report notes that "well designed clinical trials in the efficacy and safety of steroid injections and infusions are needed to better determine the benefits and hazards of their therapeutic role." Whilst in New Zealand, perispinal use of preparations such as Depo-Medrol is viewed as 'experimental' and thus carries a statutory requirement of specific informed consent by the patient, no such approach is taken in countries such as the UK and USA. As the report details, work and literature reviews to date call into question the advisability of continued use of epidural steroid injections; in particular, the 2001 Cochrane Review should be viewed as a clarion call to reassess this practice. Personally, I feel that the body of literature currently available carries sufficient weight to preclude the necessity for further studies and that bearing in mind that these procedures are now the major cause of new cases of adhesive arachnoiditis, use of epidural steroid injections should be discontinued forthwith. I am petitioning the UK Department of Health on this matter and intend to approach the National Institute of Clinical Excellence (NICE) about it.

I am disappointed that there is an absence of commentary in the report on issues such as intraspinal chemotherapy, which is known to be associated with cases of adhesive arachnoiditis. Thus, children who achieve remission from their leukaemia are now living to face the interminable damage wrought by the toxic chemicals on their arachnoid membrane. I feel that the report has failed to address this sort of issue because it was limited to literature search which excluded "articles where arachnoiditis was an incidental finding not mentioned in the title or abstract." This may have limited the scope of the report somewhat, but I fully appreciate that arachnoiditis is a cross-discipline and thus problematic subject and one that requires sourcing reference material which, by and large, tends to be "descriptive and anecdotal and relate to a small number of cases."

It is of interest and highly significant to note that the report found patient support groups to be a useful resource and, indeed, commented that whilst "it is not clear how coordinated and systematic research into arachnoiditis will proceed...support groups and clinicians working in the area remain an important impetus to future research." As we have already seen, there are remarkably few specialist clinicians, so the impetus must devolve, as ever, to the support groups. I would like to take this opportunity to applaud the sterling work by the ASAMS group, in particular, Lynne Elmslie, Dr. Wendy Anderson and Denise Sumner. Despite their own illnesses, these courageous individuals have worked incredibly hard to raise awareness and were undoubtedly instrumental in bringing the need for the report to the attention of the authorities.

However, I think it reflects poorly on the medical profession that there is not a concomitant level of effort within the medical community as a whole.

I sincerely hope that Governments in other countries may follow the New Zealand Ministry of Health example and commission similar report. As Dr. Burton remarks: "The literature review...should have been done a long time ago by Health agencies in the United States or England."

I would very much like to see my home country lead the way in this and follow up on this report with further work, in particular working towards:

1) raised awareness and thus:
2) proactive management for arachnoiditis sufferers and
3) prevention of preventable cases.

In particular, I would suggest that iatrogenic adhesive arachnoiditis be made a notifiable condition with its own specific ID code. (I note in New Zealand there is some difficulty with statistics due to use of meningitis codes).

Sadly, adhesive arachnoiditis is not a historical condition, but one which persists, with new cases arising. Bearing in mind that these are predominantly iatrogenic in origin, it behoves the medical profession to avoid complacency and strive towards upholding the closing recommendation in the NZHTA report:

"Prevention will be an important aspect of health strategies to address this condition given the recognised etiology...particularly the prevention of post-operative and post-injection complications."

As Napoleon remarked in 1820, "I do not want two diseases - one nature-made, one doctor-made."

Dr. Sarah Smith (nee Andreae-Jones) MB BS
Patron of the Arachnoiditis Trust, UK and ASAMS
March 2002.

 

 

 

 

 

  

 

 

The New Zealand Ministry of Health
Report on Arachnoiditis


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#18 gaffa09

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Posted 17 September 2015 - 11:37 AM

To get the  record  straight regarding  Myodil

Back in 1990s early after  finding  that I had Myodil in my  brain My  doctor  knew nothing  about it In fact   there  was  very little  known  about  Myodil If  any  In New Zealand

I started researching Myodil Pantapaque  causing arachnoiditis

 It took me some 18 months   to come up  with answers

First I rung a Jon Morgan reporter  for  the Dominion News paper who took up  this  story  I have all copies  ==This  ran  for months  Hundreds  of letters  flooded  in== Sufferers  with  the  same  symptoms

I  can’t  remember  but I  think TV  rung me  60minutes program  and it  went  to  air  on TV by  this  time I had  many  letters  from  the  Wanganui area   so I  contacted  them  to set up a meeting   with TV60 program  I  got  about  30 people or more  there

From  the  TV  program  some  weeks later  I  formed  a  group  and it  was named ASAM

The first  few meeting  where help  at my  home  in the garage  and it  went  well

I  was  contacted by many  through NZ  and  again  new  groups  where  formed   Then came  TV  cover  story  which  was  a  2 part total of  4 hours long

Now  to get  the  record  straight , Lynne Elmslie  was not in control  and she  was very out  spoken   that  rubbed me up  the  wrong  way as did  a few  members  Hurt by  there  condition   It  was very  fresh  to  them

My  statement   was  we  are  here  to   fight ACC  and medical  and   to make it  known  to the public of NZ

 Within 8 months Lynne Elmslie  and  her husband   had   taken  control

I  resigned =

I  also  contact  the ministry of health  back in 1992  I think==  A Doctor  Steward  Gessimine  I  think  that  is how  you  spell his name   and  continued   the  contact  for  some  time

I  am please  the health  dept  put out  a paper on it  But  WHY  is  Lynne  taking all the  credit

I  also  was in contact  with Sarah Smith in the UK  before  this Lynne  came on the  seen

 Question  Is ASAM  and Lynne  still active == I won’t have  anything  to  do  with  Lynne


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#19 gaffa09

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Posted 24 September 2015 - 09:59 AM

Supreme Court New South Wales 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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#20 gaffa09

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Posted 24 September 2015 - 01:02 PM

 

Giving evidence at the inquiry, Professor Michael Sage, a past president of the Royal Australian and New Zealand College of Radiologists, told the inquiry he believed Myodil was the most common cause of arachnoiditis.

Medsafe group manager Stewart Jessamine said little information was available about Myodil use in New Zealand, but those who had arachnoiditis should already be under care and have received treatment.

The Ministry of Health would look carefully at the inquiry report and monitor developments.

- The Dominion Post


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