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#41 gaffa09


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Posted 13 October 2015 - 09:38 AM

Accident Rehabilitation & Compensation

Insurance Corporation


                                                                                   PAYMENT ADVICE Wanganui Branch

........................................                                                                                                          paid by               direct credit

NO 3LINE WANGANUI                                                                 reference----- ™

rd 12                                                                                                                                            bank acc(

WANGNAUI                                                 wg

Your entitlement to compensation for the period 25/05/80 to 07/08/96 amounts to $174922.41.
This was credited to your above account on 06/08/96. The details of your entitlement are as

Gross Entitlement Deductions— —____ Tax_________ Nett Entitlement

$215,253.46                        $0.00                  $40,331.05                             $174,922.41

Further payments will be made to this bank account each Wednesday for as long as incapacity
continues or until a change is made to any of the above amounts. You will be notified of such

It is your responsibility to send any further medical certificates promptly to this office as
payments cannot be continued beyond the period indicated by your latest medical certificate.
Should there be a change in your ability to earn, you must inform this office immediately so
that your entitlement to compensation can be reassessed.

'                                                                                                                                                          ..                                                          m


This payment is not related  to  myodil 


Now I  will explain   this post


I had accident  while on duty in the  wellington fire service  Broken neck

​Lost  Home Marriage  and  thrown out on the street  with 5 young  children

ACC stopped  my ERC  earning  related  compassion  April 1980   reinstated  back on ERC April 1985   but  short on ERC  paying 80% of  my  80%   a shot  fall of  $97 pw  until 1996

I won in  high court  acc had  to pay back

ACC gave money  away  to Social  welfare  $46,000,00   Taxed me heavy  had  to pay Legal  aid back   legal fees   over long period  over $120.000.00

Went  for interest  over  the 16 year period   ACC paid on  the 7  8  1996  then  in  2000  wanted it  all back  plus  extra    went  to Holms  show  with it

ACC  did not  get money  back   but have  caused me  real heartache   and major problems   the money  brought me  a  home   which i lost because of  ACC


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#42 gaffa09


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Posted 15 October 2015 - 03:31 PM


 This is  the  Paul  Holmes  show I featured in during 2000

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#43 gaffa09


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Posted 15 October 2015 - 07:51 PM


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#44 gaffa09


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Posted 16 October 2015 - 03:23 PM





when  you  get  to the program   click on  the   spine  numbers it  will show up  your damage 

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#45 gaffa09


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Posted 16 October 2015 - 03:54 PM

5 March 1996

Good health

Wanganui hospital



Mr J L Handley Solicitor

Treadwell Gordon & Co P 0 Box 4216 WANGANUI


Dear Mr Handley


re:                                                                 John Cyril HUNTLEY Dob 29 09 41 No 3 Line, R D 12, Okoia, Wanganui CKP3002


Thank you for your letter of 7 February 1996. Mr John Huntley consulted me on 19 12 94 with complaints relating to double vision, blurring and seeing coloured lights. He has a previous history  of a neck injury in  1977 that has required  extensive neurosurgical,  medical and orthopaedic investigation. In 1991, he had a myelogram with Myodil.


My ophthalmological examinations have been essentially normal with the exception of a right temporal retinal hole which required cryotherapy and some peripheral visual field losses as demonstrated on computerised perimetry (Octopus 123 testing to 30 degrees) that have become substantially less as he becomes better at doing this difficult test. This is a well documented phenomenon . His visual fields are probably normal.


At no stage could I demonstrate diplopia or diminished visual acuity. The visual hallucinations of colour are purely subjective but his tests of colour vision (Ishihara charts) were normal. The flashes can be accounted for by the retinal hole and associated pathology but I could find no reason for the neuralgic type pain that he described occurring in his frontal and ocular region.It is conceivable that these may be related to a possible arachnoiditis.


Yours faithfully





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#46 gaffa09


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Posted 16 October 2015 - 04:01 PM

consistent with arachnoiditis.  The diagnosis of arachnoiditis was confirmed by a subsequent CT scan on 23/12/87.  Mr Elliot performed an open surgical exploration of the lower lumbar spine on 23/3/91 and found at the L4/5 level "there was obvious thickening and grey discolouration of the dura with a tendency to adhesion formation". An MR scan at Mercy hospital in Auckland on 2916193 confirmed the diagnosis of arachnoiditis in the lumbar dural sac.


The diagnosis of arachnoiditis in Ms Tawaka's case is therefore not in question. The central issue is whether it is due to the original Myodil myelogram in 1979.


3.Summary of the Radiology literature

Chronic lumbosacral arachnoiditis is characterized by the formation of granulomatous tissue and nerve root adhesions within the meningeal sac. It causes thickening and distortion of the spinal meninges and the nerve root sheathes with adhesion of the nerve roots to eachother and to the meningeal sac. Arachnoiditis has been associated with with a variety of clinical symptoms including back pain and lower limb pains of varying types.

\!..- However several authors have noted the often poor correlation between the

Iseverity of the radiological and surgical findings, and the severity of the

patient's symptoms.

It is well recognised that there are a variety of possible causes of arachnoiditis. In  countries where the diseases are endemic, both Tuberculosis and Syphilis are associated with arachnoidits.  However in New Zealand most cases are associated with intrathecal or epidural injections of anaesthetic agents or steroids, or previous myelography and surgical treatment of spinal disease.

Prior to the early 1980's, the investigation of choice for spinal disease was myelography.  At this time, neither CT nor MR was available in New Zealand for this purpose.  Myelography involves performing a lumbar puncture and injecting the contrast into the spinal sub-arachnoid space. The contrast used prior to 1980 was oil-based iophendylate or "Myodil". As much of the contrast as possible was withdrawn from the spinal fluid following the examination, but it was virttially impossible to withdraw every last drop. Water-based non ionic.contrast is much better tolerated, and is completely absorbed following the examination, but it did not become available in New Zealand until the mid 1980's.


This is  from Russell Worth

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#47 gaffa09


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Posted 16 October 2015 - 05:32 PM

John Cyril  Huntley


It  is  also  interesting  that  Mr  Huntley was contacted and refused  to return his X-rays

-                                                                                                                        I                                                                                                                                                                I

to Good Health Wanganui, thus depriving us of a  chance  to scrutinise  them . I  then wrote to Glaxo the manufacturers of myodil  (18)  and  they  are obtaining  information from  the  Uk.


Reading throush Mr.  Curtis's  notes  it  would  appear  that  Mr. Huntley  is  complaining that the pain in his arms is related to myodi! which  I  failed  to diagnose.  However  I would point out there is no myodil  in  his  cervical  canal. The  myodil  can  certainly form spinal adhesive arachnoiclitis, and I enclose a  copy of  an article by  R . A. Dolan, 1993 (19). !also enclose appendix(20) edited by T. P. Morley. There is a further article Post Operative Complications in Neurosurgical Practice (21 ). There  is a further article from the BMJ (22) Chronic spinal  arachnoicditis (23). Appendix 24 is on Myelography from Wilkins and Rencachury. I also enclose  (25) a list of  articles . which  we intend  to get. However all of  these  are  not available in Wellington end will have to be obtained by  Interloan  from  NZ. and Australia.



The net result of all of this is  that  some  myodil  is  residual  either  after  the myelogram performed in Wellington or after te second. procedure in tne Hawkes Bay. There is no Myodil in the upper cervical cord and the Iatter in the basal cavity ' of the brain has never  been  known  to cause any problems. Ii- is  extremely  doubtful whether the mydol has caused an arachnoiditis and caused the stated ongoing symptom s.

 One would  feel  that  if  there  was  11


failure  to  diagnose" that  there  was a  failure  of  further


treatment. It is a well know n fact that once myodil is present  in the  column  in loculative form,  it  is  impossible  to  get· it  out.  There  is  also  adequate  evidence  that even  if  it  is  renmoved  at  the  time   of   myelgraphy',  the   arachnoiditis   can   carry   regardless


Throughout the  world  there  is  increasing  evidence  that.myodil  is quite dangerous and in fact  has  been  withdrawn  from  the  market  However  at  the  time were we using  it,

;.W;e had  no alternative  ie; it was the only  way of  imaging  the Spine.


It   concerns   me   that  medical  misadventure   can  rear   its  head   15  years  after the

procedure using myodii. Thus I would ask the Committee if there is c Statute of limitations  on  when  claims  can :.be brought.

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#48 gaffa09


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Posted 16 October 2015 - 05:36 PM

HI Dylan


I'm not sure how much help I can be in trying to sort out John's incredibly complicated case. My concern is that many of his symptoms could be attributed to things other than the Myodll injection and knowing the modus operandi of ACC  this is exactly what ACC will decide to do.


There is no doubt John has Myodil in his head. The 1994 showed it quite clearly. Subsequent scans in 19999/2005 and 2008 showed changes but none of them showed arachnoiditis. He sent me an eye specialist letter from an eye specialist in ·1996. This will carry very little weight-. Once the guy said "conceivable that these may be related to possibly arachnoldltis"  ACC are 100% guaranteed to say that If there is any other possibility they'll stick with the other options. We both know how they work and once a glimmer of "possibility" is mentioned this report will be discounted. Even if the guy had stated "in my opinion this is arachnoiditis related" then ACC would just pay another specialist to give them the opinion they can buy that suits them.


I also note a neuropsychological report from 2010 which gives him the diagnosis of an organic brain injury. However it stated this could be caused by either traumatic brain injuries from 1997, his epilepsy or the Myodil. I see there was a recommendation in this report to get a MRI sca·n but don't think this was every done.


Maybe the best thing to do is get ACC to pay for him to see a neurologist who is up to date with Myodil related issues and If they feel an MRI is needed they'll order one. I can't order MRls and have no expertise with Myodil arachnoidltls ..


Andrew Miller

Bush Road Medical Centre

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#49 gaffa09


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Posted 17 October 2015 - 10:30 AM

Russell   Worth.                                      37       Welli ngton          R d.,


FRCS(Ed)         FR ACS       DipA v Med

Kil bi rnie,

W elling t on       6003,



N e u r o s u r g e o n .

N EW     ZEA L A N D


Aviation  Medical  Specia list.

PHONE  O.t  386



FAX         04 386





October 5, 1995.


Mr. J. R. Handley Treadwell, Gordon & Co., PO BOX 4126,



Dear Sir,


re John Cyril Huntley


As requested please find relevant papers from Mr. Huntley's file. I apologise for the delay in getting them to you, but I have had the whole file vetted by Jenny Gibson, of the Medical Protection Society.


Yours faithfully,





QUESTION   why has Russell Worth  vetted  my files

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#50 gaffa09


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Posted 17 October 2015 - 10:43 AM


John Cyril Hun t ley......................................................................................................................................................................................... I







In  summa ry  -


There  is  no  doub t  t ha t  Myodil  in  the  suborachnoid  space  causs arachnoid itis. However

in gene ral  this is conf ined to the lu mba r region. Despite ari' intensive litera ture sear ch                                                                                                                                                            !

I con    find    no    evidence     tha t    Myodil     in    the    basal     cisterns       auses    any       problems wha tsoever.



>                                                                                                                                                                                                                                          !


As  far as I  am  able  to  ascer tain  wi t h  th paucit y  of  informat ion  tha t  hos  been  provied



to  me,  tvl r. Hun tley ' s p:oblem  is rela ted  to chronic pain in his arms. This may be due                                                                                                                                                                                                                                                                                                                    I




to  mechanical   instability   or   to  arachnoidi tis  of   the  cervical  spinal  nerves.  However  as I  did  not  see  him  for  many  years  I  am  am  at  a  loss  to  know  how  I  can  be  hel::J .


responsible for the failure to diagnose retained Myodil.                                                                                                                                                  (


As soon as further  information  is available from Glaxo U:<. t he manufact urers of

. l'v\ yodil,  I  will  forward  it  to  the  Commit tee.


You rs  .sincerely,                                                                                               


R . J . Wort h.

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#51 gaffa09


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Posted 17 October 2015 - 10:51 AM

Mr John Huntley I 0 Ikatere Place Whangarei

Hamilton 3240

New Zealand


Ph 07·957 5700

Facsimi e 07-957 5701

Freephone 0800 101996







Dear Mr Huntley



Lump Sum/Independence Allowance Application


Thank you for sending ACC your Application for Lump Sum/ Independence Allowance Medical Certificate (ACC554). Unfortunately, there was some important information missing, so ACC has not been able to process your application.


Your ACC054 form is attached and the areas marked that you need to complete. To avoid any further delay, please complete the form and return it to this office in the freepost envelope provided.


Ifyou have any questions, please contact ACC on 0800 IOI 996.




Yours sinc.rely                                                                                 



t:          amson

Claims Officer (Entitlements)


Encl. Incomplete ACC054; Freepost Envelope

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#52 gaffa09


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Posted 18 October 2015 - 01:49 PM

To  Readers

I have been  reading  for  hours  thousands of  pages  out of  a cupboard  full  I have  just  started  

I note  that in ACC files  pages  are blacked out  in fact  many whole lines  blacked out    question Why 

​I also   note  that  a  swag  of  medical  reports missing    question  again WHY

 It is  impossible  to scan   to  place up on site   so will be  taking  the nuts  and bolts   from  them  

  I  can assure   you   this is  cruel  and  again  now  taking it  toll  on my  body

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#53 gaffa09


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Posted 26 October 2015 - 02:48 PM

Medical cover-up

By Sue Dunlevy

29 july 2002

THOUSANDS of Australians are living in chronic pain after their spines were injected with a dye in an X-ray procedure that was used for 42 years. The Daily Telegraph has documentary proof the Federal Government, state health authorities and doctors sanctioned the use of the dye even though they knew the devastating effects of the chemicals in it. The dye enabled doctors to see the spine more clearly in a type of X-ray called a myelogram and was used between 1945 and 1987. Victims of the dye's effects suffer burning back pain, incontinence, loss of bladder control, visual impairment, seizures and paralysis. Known as adhesive arachnoiditis, the disease is caused by the inflammation and fusion of the nerves and membranes of the spinal cord. The condition can take up to 10 years to develop. Derek Morrison, a sufferer who has spent 10 years researching the dye's use and has organised a national support group for around 3000 Australian sufferers, is demanding an independent inquiry into the use of the chemical. Mr Morrison can't believe the government licensed the chemical for use.

"You've seen the chemical make-up of the substance - it contains benzene, hydrochloric acid and sulphuric acid," he said. "How could they ever think that injecting those chemicals into somebody's back would not be harmful?" Doctors were warned not to spill the chemical on rubber because it destroys it and dissolves polystyrene cups. Sufferers want to know why the Therapeutic Goods Administration the federal body charged with checking the safety of medicines allowed its use when studies from 1945 had linked it to a adhesive arachnoiditis. They also want to know why doctors never warned them. They want to know how many victims there are and help to cope with the disease.

The Therapeutic Goods Administration never tested the oil-based chemical iophendylate known as Myodil and Pantopaque which was injected into people's spines. "It was before the Commonwealth began to evaluate drugs of this class," former federal Family Services Minister Senator Rosemary Crowley told state MP Andrew Refshauge in 1994. Documents supplied by Mr Morrison show that in June 1995 the NSW Health Department's radiology advisory committee stated that "Myodil caused arachnoiditis, can cause chronic, severe and debilitating pain and may rarely progress to cause motor and sensory deficits". But it advised that the benefits of the chemical outweighed the risks. Stanley Fraser's life became agony after he had a myelogram in 1976. Aged 69, he is now dependent on 100mg of morphine a day and his wife has to help him dress and bathe. "I get all this pain, like walking on broken glass, problems with my bladder," he told The Daily Telegraph.

His problems began when, aged 43, he had an X-ray for head and neck injuries caused in a coal mine. He said the dye injected before the X-ray was never removed. Four years later he was in such pain he was forced to leave work an invalid and it has taken him until this year to reach a settlement with the Hunter Area Health Service. Documents supplied by Mr Morrison show that although the drug Pantopaque was supplied in breach of the rules to many hospitals in the 1970s the therapeutic goods branch of the Health Department took no action against the supplier. The Therapeutic Goods Administration now says Pantopaque was used intermittently during the 1960s and 1970s but it was only given general marketing approval in 1979. It was at this point it insisted warnings about arachnoiditis be included in the prescribing information, including that it be removed after the X-ray.

But radiologists say it was not standard practice to remove the dye.

Glaxco Smith Kline, previously Glaxco Wellcome which owns myodil, claims there is "no conclusive evidence that Myodil causes arachnoiditis".

A spokesman said the company sympathises with those people who believe they have suffered as a result of myodil use but it says their original condition or surgery may be the cause of their pain. The company no longer sells the Myodil.

A Prince Henry Hospital radiologist, Professor Palmer, says he performed 1500 myelograms and supervised a similar number from 1966.

He told The Daily Telegraph although he knew Arachnoiditis could be a consequence of the procedure he did not routinely warn his patients about the risk of developing it.

Source:    http//thecouriermail.news.com.au/printpage/0,5942,4793107,00.html    © Queensland Newspapers

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#54 gaffa09


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Posted 26 October 2015 - 02:57 PM

Adhesive Arachnoiditis is an incurable inflammatory condition affecting the middle (arachnoid) layer of the meninges (which are the membranes surrounding the spinal cord). This condition is thought to be rare, although the real scale of the problem remains yet unknown.


Meninges: 3 membranes which encase the spinal cord and brain. The inner layer= pia mater; middle= arachnoid (has a web-like appearance); outer= dura (tough) mater.

Arachnoiditis: inflammation of the arachnoid layer of the meninges. Mild forms often do not cause significant symptoms and may thus go undetected.

Subarachnoid space: the potential ‘space’ between the arachnoid (middle) and pia (inner) meninges; it contains the cerebrospinal fluid (CSF) which flows around the brain and spinal cord, providing it with nutrients and oxygen.

Epidural fibrosis: (also: peridural/extradural) scar tissue outside the meninges (literally: outside the dura, the outer layer of the meninges).

Intrathecal: this term denotes a site inside the dura; i.e. inside the thecal sac, which is another term used to describe the 3 layers of the meninges.

Adhesive arachnoiditis: the most severe type of arachnoiditis, causing scar tissue to form, which compresses nerve roots and impairs their blood supply, leading the various symptoms as a result (see below). Scar tissue may impede the normal flow of CSF.

Note that often in cases of arachnoiditis, scans may reveal epidural fibrosis, and it may well be that the converse is also true, although this is not often acknowledged by medical personnel.

Important note: for the purposes of clarity and brevity, this article will refer to adhesive arachnoiditis as AA. This is the clinically significant form of the condition.

CAUSES: ^ Top       The majority of AA cases arise iatrogenically, that is, ARE CAUSED BY MEDICAL INTERVENTION.

It is helpful to divide the causes into 3 main groups:

  1. Chemically induced AA (CIAA):

This arises when chemicals are introduced into or around the subarachnoid space.

Ø    Myelogram: oil-based (Pantopaque/Myodil) and water-based: Metrizamide, Dimer-X, Omnipaque, Amipaque. Procedure used as a diagnostic tool before availability of MRI scans, still in use occasionally. Oil-based dyes remain in the central nervous system as either a thin film or as encapsulated deposits, commonly in the lumbosacral region or in the base of the skull (basal cisterns).

Ø    Epidural /intrathecal steroid injection: therapeutic measure commonly used in both acute and chronic back pain cases, including prolapsed discs. Benefit is questionable and temporary (up to 2-3 months). Risk of arachnoiditis is controversial; evidence of toxicity of the preservatives in the preparation points to a need to reappraise the continued clinical use of this procedure. Preservative-free solutions (Celeston Soluspan/Decadron) may confer lower risk, but this invasive treatment remains one in which risk may well outweigh benefit.

Ø   Epidural anaesthetics: again, a controversial subject; use in healthy obstetric patients to minimise pain during labour may be unwise if there are suitable non-invasive alternatives; combined spinal/epidural procedures involve placement of the anaesthetic agent directly into the spinal fluid. Again, it is the preservatives which are likely to cause toxic damage to nerve roots, although the anaesthetic agents themselves may also directly affect nerves. The practice of regional anaesthetic techniques such as epidurals in conjunction with a general anaesthetic (used in paediatric operations) is a cause for considerable concern as the patient is unconscious and cannot therefore alert the doctor performing the procedure to pain due to inadvertent injection directly into nerve roots. Note also that in procedures of epidural steroid injections, it is common practice to combine this with local anaesthetic to confer immediate relief (steroid aiming to provide a more sustained relief over weeks): thus conferring “double jeopardy”.

Ø   Chymopapain: this agent has been used as a chemonucleolytic agent; it is an enzyme, which breaks down disc material that has leaked due to a disc herniation (prolapse).

Ø   Intraspinal chemotherapy agents: e.g. methotrexate which is used to treat certain cancer conditions and is deemed to provide higher available drug concentrations than if given intravenously; however some authors have suggested that it is unnecessary to use intraspinal injections.

Ø   Chemical meningitis: may result from any of the above procedures; it involves acute inflammation of the meninges, often in both the spinal and cerebral (around the brain) areas.

  1. Mechanically-induced AA (MIAA):

Ø    Spinal surgery: especially multiple surgeries.

Ø    Trauma

Ø    Multiple lumbar punctures

Ø    Spinal stenosis (when chronic)

Ø    Anatomical abnormalities: especially degenerative conditions: e.g osteophytes (bony protuberances)

Ø    Chronic disc prolapse: including leaked disc material, which is known to be highly irritant to nerves.

Ø    Blood: bleeding into the spinal fluid due to invasive procedures or trauma (as above). Blood is extremely irritant to nerves. Subarachnoid haemorrhage may occur spontaneously (no invasive procedure precedes it) and can cause arachnoiditis.

  1. Infection:

Ø    Meningitis: viral/bacterial; inflammation in the meninges; usually cerebral, but may also affect the spinal meninges. Lumbar puncture is required to     establish a diagnosis.

Ø    Tuberculosis: before the advent of widespread myelograms etc. TB was a major cause of spinal AA, often in the thoracic (chest) region of the spine. There has been some increase in the incidence of TB in Western countries in recent years, possibly due to immigration from India and Pakistan, where TB is still common. TB of the spine (Pott’s disease) remains relatively uncommon though.  

Note: observations of an anecdotal nature, arising from over 3 years of regular communication with AA sufferers around the world have led to the following observations:

  1. CIAA tends to cause a more florid, severe condition with widespread symptoms; in the cases where multiple chemical insults have been sustained, there is a more severe picture, so that one can postulate that the severity of the condition is proportional to the number of invasive chemical procedures have been undergone.

  2. MIAA tends to cause more localized damage, which affects one, or two nerve roots and causes symptoms related to this specific damage.

  3. Commonly, patients with AA will have undergone a variety of medical procedures, the condition being multifactorial in origin. This gives rise to problems with regard to attempted litigation. Further investigation comparing CIAA and MIAA needs to be undertaken in order to discern a workable clinical picture, which may be useful both in diagnostic terms and within a legal framework.


SYMPTOMS: ^ Top        AA does not have a typical clinical presentation, although there are a number of features, which are common in people with the condition. However, the picture is somewhat complicated by the fact that the symptoms of AA occur against a backdrop of the original spinal problem for which invasive procedures were undertaken (except in a small minority in which no spinal condition has occurred, for instance, in AA secondary to epidural anaesthesia in childbirth).

It is important also to remember that a number of the symptoms experienced are common to various chronic illnesses and may well arise secondary to the general debility occasioned by unrelieved pain and stress resulting from dealing with illness that is relentless for years on end.

Chronic pain is not regarded by most of the medical profession as detrimental of itself; however, recently some doctors are beginning to voice a different point of view, recognising that unrelieved pain constitutes a source of constant stress on the body, resulting in over-production of stress response chemicals in the body, such as adrenaline, insulin and cortisol. These substances cause a variety of problems. In America,  highly sophisticated PET scans have shown that chronic pain in some way alters the way in which the brain responds to stress or pain;  the concentration of neurotransmitters (chemical nerve messengers) in certain brain areas seems to vary from that of healthy people.

In 1999, a global postal survey of people with arachnoiditis showed the following results:

    1. Pain (100%)
    2. Numbness/tingling (86%)
    3. Sleep disturbance (84%)
    4. Weakness (82%)
    5. Muscle cramps/twitches/spasms (81%)
    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%).

Heartburn/indigestion is also a common problem; often this is related to use of NSAIDs (anti-inflammatory drugs). Difficulty in swallowing may be related to this or may arise (less commonly) due to inco-ordination of the gullet muscles.

Headaches are also a common feature. Many people seem to develop skin rashes, for unclear reasons. (some may be related to medication such as anticonvulsants).

Other less common problems experienced include: Tinnitus (ringing in the ears), dental problems (tooth decay may be worsened by dry mouth due to loss of the protective power of saliva), abnormalities in the menstrual cycle, eyesight problems (difficulty in focussing may be due to medication).

The pain tends to be intractable and resistant to treatment, being predominantly neurogenic in origin. This causes persistent burning pain and intermittent stabbing or electric shock type pains. Burning in the feet is common and may be accompanied by a sensation of walking on broken glass.

There may also be a component of central pain, which is well known to be difficult to treat. This involves various bizarre sensations, such as pain felt on light touch or a change in temperature (allodynia) or pain felt in a different part of the body to the one being touched. People also experience sensations such as water running down the leg, or insect bites.

One doctor has likened the pain of AA 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.

There are a range of systemic symptoms which constitute a debilitating condition that severely impairs the sufferers' quality of life.

AA is incurable and may be progressive in some cases. Usually people tend to ‘plateau out’ at a certain level of pain/loss of function, but in a minority, a relatively trivial event such as a slight fall or car accident, can set off a rapid decline.

Note: in the survey, a number of respondents had a diagnosis of an autoimmune disorder such as Lupus, Sjogren’s, Rheumatoid arthritis. There appears to be a possible link between AA and autoimmune type problems. Out of 317 survey respondents, 27 had thyroid disorders, all except one having previously undergone myelography. As myelogram dyes contain iodine, there may be a significant link between the myelogram and subsequent thyroid disease; this is currently being investigated. There are also a number of arachnoiditis patients who have also been diagnosed with Multiple Sclerosis, as well as several more who have undergone investigation for MS. Those who have a diagnosis of fibromyalgia in addition to arachnoiditis are probably suffering from the condition as a secondary feature of the underlying arachnoiditis; fibromyalgic type symptoms of diffuse muscle tenderness and fatigue are common in arachnoiditis patients.

Important note: not ALL symptoms can be ascribed to arachnoiditis. Any new or increasingly severe symptom which persists for more than 48 hours should be fully assessed at a medical consultation. 

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#55 gaffa09


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Posted 26 October 2015 - 02:59 PM

Many people who have symptoms such as those described and a history of risk factors for AA still have difficulty in getting a diagnosis. As the condition is perceived to be rare, doctors often do not consider it a likely diagnosis. It is important that treatable conditions such as recurrent disc herniation are identified and treated and this can be achieved through the use of an MRI scan. High resolution scans may also be able to demonstrate AA, although in the early stages it might not be picked up. In any case, one must bear in mind that MRI scan results often fail to correspond accurately to the clinical picture. Heavy reliance on the need for a diagnosis is unadvisable, and often unnecessary, as management of symptoms is the only option, AA being incurable.

EMG (electromyogram) or NCV (nerve conduction velocity) tests may be performed to assess nerve damage. If there is loss of bladder control, urodynamic studies may be undertaken to fully assess the problem.

DIFFERENTIAL DIAGNOSIS:      This refers to other similar diagnoses which may be relevant:

Ø       Failed Back Surgery Syndrome: in fact, arachnoiditis probably accounts for over 10% of FBSS cases; FBSS is common, incidence varying from 25% to 40% of all spinal surgery cases. The commonest causes include: epidural fibrosis, recurrent disc herniation, spinal stenosis (narrowing of the spinal canal or the foramina (holes in the vertebrae) through which the nerve roots exit from the spinal cord. It is important that treatable causes such as reherniation of a disc, are identified and treated.

Ø       Multiple Sclerosis: as mentioned above, it is quite common for arachnoiditis patients to be investigated for MS.

Ø       CRPS: previously termed RSD: reflex sympathetic dystrophy, CRPS Type I refers to problems in one limb, often after trauma/surgery: pain, swelling and changes in skin colour and temperature, abnormal sweating: increased/decreased (bone density lost in later stages). CRPS Type II (previously causalgia) refers to more widespread problems, other than in the area affected by an injured nerve and resembles arachnoiditis. Continuous pain, allodynia (pain from non-painful stimulus such as light touch/clothing/temperature change) and/or hyperalgesia (heightened pain) can occur. (also: skin rashes, abnormal body temperature, tremors (shakes), tripping/falling.)

Ø       Cauda Equina Syndrome: acute CES is a surgical emergency; loss of bladder/bowel function, saddle anesthesia (loss of sensation or tingling in the buttocks and around the anus/vagina/genitals), leg weakness and severe pain in the lower back/limbs/genitals. CES is basically a descriptive term for a set of symptoms. It may arise when there is a severe compression in the cauda equina, (horse’s tail) at the lower end of the spinal cord (acute causes include large disc prolapse). A chronic equivalent to CES may arise in arachnoiditis.

MANAGEMENT:^ Top      As explained above, AA is incurable, but there are a number of measures which may be helpful in managing symptoms.

Sadly, in a survey in 2000, I found that quite a high proportion of AA patients continue to experience very troublesome levels of pain as well as other symptoms including loss of function.

In part, this may be due to reluctance of medical personnel to prescribe medication in the long term, especially narcotic painkillers, which are perceived as carrying a high risk of addiction. In fact, narcotics used for pain relief (in comparison with recreational use) carry a very low risk of addiction in the generally accepted sense of the term. Whilst the body becomes accustomed to a certain level of medication and goes into withdrawal if the drug is abruptly discontinued, psychological dependence is uncommon. Behavior that may be regarded by medical and paramedical practitioners as addictive, may arise out of a desperate  bid to find adequate pain relief. Often, doctors are willing to prescribe medication such as anxiolytics or hypnotics (treating anxiety or insomnia) such as Valium (diazepam) or related drugs: which are in fact, far more addictive than narcotics (morphine and related drugs) and carry a risk of tolerance (needing increasing doses) that far exceeds that of narcotics. Usually, what the patient really requires is an increased dose of painkiller to relieve their ‘anxiety’ or sleep disturbance. Families may also be wary of narcotic use, deeming it as inappropriate; the stigma is still very much in evidence.

Management of AA should revolve around a wholistic approach and may require a multidisciplinary team involvement. However, this should be overseen by one individual amongst the medical personnel (usually the primary doctor or GP) It is vital that the patient develops a working therapeutic alliance with his/her doctor(s).

This will pave the way to a good level of compliance and a mutual trust and respect.

Treatments should be implemented one at a time and must be trialled for at least 4-6 weeks (unless there are severe side effects or allergic response) in order for adequate assessment of their efficacy can be made.

Round- the- clock dosing is essential to achieve effective pain relief and minimize side effects and tolerance (need for increasing doses to achieve the same effect).

Usually side-effects begin to subside after about 10-14 days of continued usage, so patients should be advised to ride out the first few days of sedation, nausea etc. if possible. Persistent side effects such as constipation and dry mouth are common, but may be managed fairly easily.

Below is a brief outline of the various strategies which comprise a multimodal programme:

1.      Medication: often oral, but may also be via a patch. Typically, a triad of narcotic/antidepressant/anticonvulsant is used, +/- muscle relaxant +/- anti-inflammatory. (see below for more detailed list)

2.      Physical therapies : massage (Shiatsu), chiropractic, cranialsacral therapy, Myofascial Release techniques; stimulating: Low Level Laser Therapy, Ultrasound, TENS; Acupuncture;

3.      Exercise: loss of mobility may have a knock-on effect in general debility, and can directly contribute to development of osteoporosis; gentle exercise is helpful; ‘No pain, No Gain’ does NOT apply and exercise regime needs to be carefully tailored to the needs of the individual. Feldenkrais, hydrotherapy, isometric exercises are often helpful.

4.      Treatment of specific problems: e.g bladder dysfunction; poor circulation in extremities

5.      Management of side effects:  such as constipation

6.      Nutritional: avoidance of caffeine and possibly trigger foods; supplements such as vitamins, MSM, glucosamine.

7.      Herbal/homoeopathic: NB. Herbal preparations may interact with prescription medication; St. John’s Wort (depression); Gingko

8.      Lifestyle measures: smoking: preferably should be stopped as it worsens circulation; alcohol: may interact with medication; if taken in excess, as a strategy to aid sleep/reduce pain or distress, it may act as a depressant i.e. causing a low mood. Illicit drugs such as cannabis have been reported as helpful in reducing muscle spasms and enhancing pain relief; cannabis is currently being trialled in the UK for use in MS patients.

9.      Psychological: often people with arachnoiditis are reluctant to admit to emotional distress because they have been labeled as having a psychosomatic illness in the past; however, psychological difficulties are only to be expected in a debilitating, incurable illness. Often complex psychological situations may arise, particularly with regard to the causative factors (being mostly iatrogenic): anger and bitterness can be very strong and persistent, often being fuelled by day-to-day frustrations over loss of function, relationship troubles (as with any chronic illness, considerable strain is put upon partners and family) and fear for the future. Individual counseling, couples, or group therapy may help address issues on grief (over loss of health, role, financial security, self-esteem etc.etc.) In addition, patients can be instructed on strategies for self-help in learning to cope with ongoing illness and pain; these include Cognitive Behavior Therapy, which can be very helpful

10.  Support groups: groups are invaluable in allowing sufferers to be in direct contact with others who are going through the same sort of troubles. This contact helps to reduce the strong sense of isolation which is extremely prevalent in people with chronic illness.

11.  Information: the Internet can be a very useful resource, but it must be remembered that not all the information is from reliable sources; one should always check that material uses reputable (and verifiable) references. Support groups can be sources of useful information on the condition and other issues regarding the day-to-day effects of the illness on various aspects of life. 

12.   Aids: ranging from simple measures such as pads to place in shoes to make walking more comfortable to wheelchairs; these can really help in daily life.

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

The survey results showed the following as regards treatment regimes and in most cases, polypharmacy( a cocktail of drugs) is necessary:

Ø       OPIATES (e.g. Morphine, Pethidine (Demerol), Methadone, Tramadol etc.): 171=54% (note: Buprenorphine: Temgesic is a partial opiate agonist: and partial  antagonist; this means that it may give rise to withdrawal symptoms in patients who have previously taken strong opiate drugs)

Ø       ANTI-INFLAMMATORY (e.g. Brufen, Mobic, Naproxen, Vioxx etc.): 144=45%

Ø       ANTIDEPRESSANT (commonest amitriptyline; also Prozac etc): 90=28%

Ø       ANTICONVULSANT (e.g. Tegretol; Neurontin; Vigabatrin): 84=26%

Ø       MUSCLE RELAXANT: (e.g. Baclofen; Robaxin; Dantrolene; Zanaflex): 34=11%

Ø       BENZODIAZEPINE (e.g. Diazepam, Clonazepam, Nitrazepam, etc.): 39=12%

Ø       DIURETICS (for fluid retention): 17=5%

Ø       INA (intraspinal narcotic agents= "the pump"): 8=2% incl. CLONIDINE: 2

Ø       SCS (spinal cord stimulator): 2

Ø       STEROIDS: 4 (1 via portal implant)

Ø       QUININE (for muscle cramps): 3

Ø       OXYBUTININ (for bladder muscle instability): 1

Ø       BETHANECOL (for urinary retention): 1

Ø       ETIDRONATE (for prevention of bone loss in osteoporosis): 1


Ø       TENS: 2

Note low percentage on no medication or simple analgesia; generally, for respondents who were not on medication, this was due to inability to tolerate stronger medication due to side-effects or adverse reactions.

Most cases in the survey involved polypharmacy, with a combination of opiates with antidepressant and/or anticonvulsant being common. Anti-inflammatory medication (NSAIDs) usage was common despite a considerable number of respondents stating that they had had to discontinue use due to adverse gastric effects (e.g. gastric/duodenal ulcer, heartburn, gastric bleed), which are well known with this type of medication.

Antidepressant medication is used at a sub-therapeutic dose as regards treating depression (i.e. say 25mg amitriptyline rather than 75-150mg) it is useful for neurogenic pain. Tricyclic antidepressants are most effective, whereas SSRIs (newer type) such as Prozac are often poorly effective. Of course, in some cases, full antidepressant dose may be given to combat any depressive features compounding the physical problems. Anticonvulsant medication is useful for neurogenic pain.

Benzodiazepines: a group of drugs including valium: used either as a muscle relaxant or to combat anxiety, or perhaps as sleeping tablets.

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

 PROGNOSIS:^ Top      The outlook for patients with arachnoiditis is unfortunately as yet unknown. There has only really been one medical article written about this, published in the late 80s by Guyer. He contends that on average, life expectancy may be shortened by as much as 12 years. Arachnoiditis, as discussed above, is as yet incurable.

There is considerable controversy over whether it is a progressive condition. In the majority of patients, there may be a gradual decline over a period of years  with increasing pain levels and some loss of function. Some people seem to reach a plateau and remain stable. Those who can stay off strong medication and are able to maintain a reasonably active lifestyle seem to do best. In a small minority, a quite minor injury from a fall or car accident can trigger rapid decline.

A few patients go on to develop complications such as arachnoid cysts (encapsulated fluid collections around the spine or in the brain), syringomyelia (fluid-filled cavity in the spinal cord) or hydrocephalus (enlarged ventricles in the brain). Other complicating conditions include: depression, osteoporosis (due to lack of mobility).

By and large, though, there are AA patients who have had the condition for up to 20 years and are still able to be relatively independent and reasonably mobile.

AA is not directly fatal. However, there have been cases of suicide due to the despair of unrelieved pain.


One of the most tragic losses experienced by arachnoiditis patients is hope for the future. Most see a bleak and pain-filled existence centred around an unrelenting illness. However, we must never lose sight of hope: as Bernie Siegel wrote: 

“ Hope isn’t statistical, and individuals recover. There will always be a first person to recover from every disease…..there is no false hope. False hope tends to be a recital of statistics, and people are not statistics. But there is false no hope.”

What better note to end on than to quote Dr. Goodling, from Duke University, who said:

“It’s so important for people who are hurting to know that the story hasn’t been finished. Things are terrible now, but there’s more to the story.”

 ^ Top


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#56 gaffa09


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Posted 26 October 2015 - 03:06 PM

What Doctors Don't Tell You © (Volume 4, Issue 8)

Arachnoiditis is a little-understood condition in which the middle membrane protecting the spinal cord becomes scarred. Nerves atrophy and become enmeshed in dense scar tissue, which presses constantly on the spine. Minneapolis' Dr Burton, one of the few medics to make a study of lumbar sacral adhesive arachnoiditis (LSAA), estimates that it accounts for 11 per cent of patients with 'failed back surgery syndrome'.

Although LSAA results from a number of different causes, in Dr Burton's view, it essentially reflects the introduction of foreign substances into the human subarachnoid space. Dr Burton says the foreign body most often identified in victims is iophendylate (known as Pantopaque in the US, Myodil in the UK), the oil-based dye used for myelograms. In LSAA, he says, iophendylate is often found in a cyst within the scar tissue mass. In his view, a million people worldwide suffer from arachnoiditis caused by this dye, and this view could be conservative. Until the 1980s, nearly half a million myelograms were being performed in the US every year.

Pantopaque was introduced in the US in 1944 after one study convinced the medical profession that it was safe. This was despite animal studies showing that Pantopaque caused arachnoiditis, says Burton (the Swedes banned the product from use in humans in 1948). Even though the product is no longer manufactured by Glaxo, since the onset of water-based dyes and imaging techniques, iophendylate continues to be used around the world, says Burton, and many back specialists continue to maintain that iophendylate is safe.

The US Food and Drug Administration and the British government have made no moves to ban oil-based myelograms. 'Despite the fact that iophendylate was identified as being causally related to the production of arachnoiditis from the time of its introduction, its use in the US has never been restricted by industry, government or the medical profession,' says Burton. It has needed patients with myelogram-induced LSAA to bring legal suits against the manufacturers before anyone else took notice. In the UK the Arachnoiditis Society now has some 1000 members and a class-action suit is underway against Glaxo.

The water-based dyes now being used instead are not without risk. One woman being investigated for sciatic (back-caused leg) pain with iopamidol (Niopam 200), a water-soluble contrast medium, was immediately rendered paraplegic (The Lancet 27 July 1991), as was another middle-aged woman given a myelogram with iohexol (Omnipaque), another water-soluble dye (The Lancet 16 March 1991). Burton says that some new mediums have caused such pain that they had to be performed under general anaesthesia.

He concludes: 'The medical profession has not yet succeeded in finding a benign, effective myelographic medium.'

Lynne McTaggart 

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#57 gaffa09


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Posted 26 October 2015 - 08:17 PM


Arachnoiditis group on


Kapiti Coast to start


A SUPPORT group for sufferers of debilitating back injury arachnoiditis is to be set up on the Kapiti Coast.

Glenys Lowe, of Paekakariki, said yesterday she intended to hold a meeting of sufferers next month to form the group.

Support groups are being set up around New Zealand. A Palmerston North group was formed last Month with the help of the Disability Re­sources Centre and a Christchurch group was formed this month. Groups already exist in Wellington and Wanganui.

The groups stem from a campaign begun last September by former Wai­nuiomata firefighter John Huntley, now of Wanganui, who, in an article in The Dominion, blamed the X-ray contrast dye Myodil for his problems.

He has severe headaches, loss of balance, electric shocks in his head,' pains in his arms and legs and around his heart, and cramps that seize his whole body.

Mr Huntley. and the Whanganui Disability Resources Centre were swamped with calls from people throughout New Zealand after the ar‑


ticle appeared. Centre manager Les Gilsenan said the calls were still com­ing months later and he estimated up to 5000 New Zealanders were arachnoiditis sufferers. He had a re­gister of 600 people.

Most claimed they had been in­jured by a contrast dye, most com­monly Myodil, or by back surgery, or by injections of steroids, mostly Depo-Medrol, into the epidural space caround the spine.

Most common symptoms were se­N./ere pain in the lower back and down the legs, a burning sensation around the,waist and through the intestines, arid bowel problems:,

Mrs Lowe, who had a Myodil in­jection in 1976 and has had three back .operations sine, said she had severe nerve pain down both her legs and a constant lower back pain, which prevented her from taking part in any activity that, involved standing upright or travelling in a car 

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#58 gaffa09


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Posted 26 October 2015 - 08:25 PM

this is Pantopaque== Myodil=== drops in a  cup

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#59 gaffa09


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Posted 27 October 2015 - 12:12 PM

12 January 1984

Russell Worth

37 Wellington Road Kilbirnie


Dear Mr Worth

Re : Mr John Cyril HUNTLEY, 28-Liverpool Crescent, FLAXMERE  (formerly of 40 Kowhai Street, Wainuiomata)

Date of Birth : 29/9,441         Date of Accident : 22/11/77

I would be most grateful if you could review this patient's problem, which I inherited on taking over this practice some eighteen months ago. During this period, I have seen him go from apparently extreme pain and limping around on crutches to what appears to be very little disability at all, being able to walk, drive his car and generally lead a fairly noraml life. This has been mostly due to intensive physio­therapy, antidepressants and regular counselling and psycho­thecapy from myself.

However, John still reckons he has a problem which he thinks

is due to something dreadful going on in his neck. Unfortunately the physiotherapist tends to agree with him, thinking that there may be some residual cervical cord compression causing intermittent symptoms of nerve root pain.

On examination, he has a couple of small lumps on the back

of his neck, (which become infected every now and then) which could possibly be stitft: abscesses from the original surgery. His neck movements are generally a little restricted. Other­wise, he does seem remarkably well and, in fact I believe ,

suffers from very little disability despite his protestations. He, however, feels differently and would very much like to see you again with the possibility of a repeat myelogram being uppermost in his mind.

I would be most grateful of your opinion an'] for your advice on further management.

Yours sincerely.


Bloody Doctors  for   you  what   the hell  do  they know

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#60 gaffa09


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Posted 27 October 2015 - 12:17 PM



9 December 1994 Our Ref: HUN047

The Manager

Medical Misadventure Unit P 0 Box 12195


Dear Sir

Mr J C Huntley - Claim No. 112107750/003

We act for Mr Huntley and we have your letter dated 3 June to him. We note there has been no further progress on this matter. Mr Huntley is becoming concerned about delays.

We understand that the claim for medical misadventure arising from two different situations. The first is the use of the dye which was used in 1979 during a myelogram. This is apparently a metallic oil-based dye that has not been used in New Zealand for some time and in fact was not used in other countries at the time that it was used in Mr Huntley's case.

The second problem is that the specialist (Mr Worth), when using the procedure, failed to use proper care and that resulted in the dye moving into the brain. Our instructions are that the normal practice was that steps would be put into place to prevent this but in Mr Huntley's case those steps were not effective. Can you please advise us as to progress in this matter. We do not have copies of notes from the operation or relevant to this operation from the specialist and we would be pleased if you could advise us whether you have those notes. If you have, could you please forward us a copy. We enclose an authority signed by our client.

We look forward to hearing from you as soon as possible.

Yours faithfully


J R Handley 

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