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Arachnoiditis is a Neurogenic Pain Syndrome

Arachnoiditis is a neurological disease it is also an auto-immune disease

Arachnoiditis begins with inflammation of the Arachnoid membrane which covers the spinal cord.
A gradual build up of fibrotic scar tissue tethers the nerves to the Arachnoid membrane. This scarring disrupts the flow of cerebro spinal fluid around the nerves and deprives them of nutrition.

 

Injury to the back, infection, surgery, Myelograms, Epidurals, any invasive procedure to the back or neck can cause Arachnoiditis.

 

Early symptoms include severe low back pain, persistent headaches, numbness & pain in the limbs, seizures & burning sensations in the legs and feet. Often there is no outward sign of the disease and sufferers look normal.

 

As Arachnoiditis develops the symptoms worsen, sufferers are often severely disabled, and some are confined to wheelchairs and most have to give up work entirely.

 

Arachnoiditis affects CHILDREN & ADULTS, there is no known cure. The CHRONIC PAIN caused by Arachnoiditis can be equivalent to that of terminal cancer. Life expectancy is reduced by 12 years.

 

Arachnoiditis is still not a widely recognized disease; it does not show up on a normal x-ray, an MRI scan is needed. Many doctors worldwide are not familiar with it, yet medical research has estimated tens of thousands of people in the UK alone are suffering from undiagnosed Arachnoiditis and being told their pain and disability is attributed to some other physical or psychological condition.

 

Arachnoiditis is a condition which causes chronic inflammation of the delicate membranes covering the brain and spinal cord. Arachnoiditis is incurable, it affects children and adults. The chronic pain can be equivalent to that of terminal cancer. Thousands of people have been left severely disabled with only a lifetime of pain and agony ahead of them, many, unable to face such a hopeless future, have taken their own lives.

 

Arachnoiditis is not a well known disease, it has in fact been known for over 100 years, the first case of Arachnoiditis was diagnosed in 1922 but amazingly even today only a minority of doctors recognize its existence.

 

Contrary to popular opinion of some medical professionals, Arachnoiditis is NOT a RARE condition, official figures indicate that between one and two percent of back pain sufferers are affected by Arachnoiditis, approximately half a million people.

THERE ARE MANY CASES GOING UNDIAGNOSED.
Posted on Gateway to Neurology of Massachusetts General Hospital

LETTER WRITTEN TO KEVIN RUDD PRIME MINISTER OF AUSTRALIA on the 12th November, 2008

The Hon. Kevin Rudd PM

Prime Minister

Parliament House

Canberra ACT 2000
12th November, 2008
Australian Arachnoiditis Sufferers

Association NSW. Inc.

46 Malvern Road

Glenwood NSW 2768
Dear Prime Minister

 

I am the President/Secretary of the above Association. I started the Assoc. 4 years ago next March with 11 people around my kitchen table and we have grown to around 180 and more coming in each week as they find my website. I wanted to bring this to your attention as watching you over the last few weeks, your movements, comments etc. I believe at last we have a politician with a heart. We have tried to have the subject of Arachnoiditis tabled in parliament several times by Jennie George on the South Coast of NSW with no luck.

 

I am asking you to read my letter and understand the chronic pain sufferers of Arachnoiditis are going through, when their GP will prescribe Morphine but won’t mention the word Arachnoiditis, when your Neuro Surgeon refuses to have anything to do with you because a solicitor has rung him for help. There are many sad cases. In mine my Neuro diagnosed me with Arachnoiditis and when I took the film back to the Radiologist dept. they said there was no Arachnoiditis, because hospitals are terrified of being sued. I had a wonderful job in a library as IT Manager for 18 years and I continued to work until I was collapsing at work and it was only because of a man called Derek Morrison who had managed to get it front page of the Daily Telegraph that my work mates recognised my symptoms and I went to my specialist and he said ‘Bloody papers’. After some months he called me in and apologised and showed it to me. He said he would never do it again and he did and then he called me in and diagnosed me with another Neuro surgeon and he said it had got no worse and I said to him “Well how could I work in 2003 and now I can hardly walk”? No answer!!

 

Arachnoiditis is caused by injecting an imaging dye into the spinal canal. The dye most of us had can take up to 15 years to work although you know there is something wrong but not what is wrong. There were no MRI’s so Myelogram’s were used by injecting a dye called Myodil into the spinal canal and you were not allowed to sit up for 24 hours. We were not given any warnings of the suffering this dye could cause. It was banned in Sweden in 1948, in the US in 1957 and eventually in Australia in 1989, though I believe that some hospitals were still using their leftovers. This dye contained Hydrochloric and Sulphuric acid, potassium permanganate and benzene(a cancer causing substance) an oil base. This chemical is corrosive, if put into a polystyrene cup the cup would be almost gone in the morning, it was injected into our spines where it corroded the nerves, the spinal cord and migrated to other areas. I have several members who have Myodil droplets on the brain. It also attacks other organs wrecking havoc through your body and chronic pain. I have been taken to hospital twice by ambulance with a symptom called Restless Leg Syndrome, the pain is so chronic that you would overdose to ease it. I have been told by the hospital not to wait but call the ambulance immediately.

 

I also have Alloydnia where the nerves have grown under the skin on the lumbar part of my back. No one can touch it, it is like having an ulcer in your tooth but you can not pull it out. I have to use a walking stick and have convinced several of my members to swallow their pride and do the same as we lose our balance and fall over. I and others need an electric chair but I am on a pension and my husband is my carer and there is no way that we can afford one.

 

The manufacturers must be held accountable for their deceitful and misleading statements on product safety. We were told that it was removed but you can not remove oil, everyone knows that when you finish your bottle of oil and even if you wash it there is always a residue in the bottle. Quite often when some of my members call me I end up in tears as they describe how ill they are and their lives are ruined, they lose friends and family because they can no longer go out or join in they feel useless and unwanted.

 

The AS National Institutes of Health list 80 medical conditions caused by this chemical based on adverse reactions, many of which can be life threatening. I know of one of these as I suddenly found myself in Isolation for 2 weeks with Viral Meningitis which is caused by Arachnoiditis.

 

My biggest wish is to see that Arachnoiditis is a notifiable disease like Meningitis and all the contagious diseases and other illness’s that are accounted for. There are thousands of sufferers out there with this disease and my most common response is ‘Thank goodness you have it too. I thought I was the only one with it as I have never heard of it before’ but they are not and no one knows what the disease is, they say what is the matter with you. You tell them Arachnoiditis and they go Oh!, I’ve never heard of it, so we suffer in silence with the ones of us that are lucky enough to have carer’s. When my member’s say I have a bad back, I tell them not to say that or they will get all the bad back stories. I tell them to say “I have an incurable spinal disease” because that is what they have.

 

I am enclosing a letter that was sent out by the Australian Institute of Radiography. They state in their letter to Mr Peter Groves of the Queensland Association that they no longer educate students to search for Arachnoiditis as there are not enough of us. Dr Sarah Andrea Smith, the world expert in England would disagree with this. She is also a sufferer and has many articles on the internet to educate sufferers, and Dr Aldrete in America who is also an expert on it. They have been involved in a court case that had finally finished and had taken 10 years. I have had emails from Canada, America, NZ and England asking for help and I tell them to try and help their own countrymen and themselves.

 

There are several ways to get Arachnoiditis and people should be made aware of it. I had 2 male callers last week who got it through Cortisone injections into the spinal canal. People have to educated to learn not to let anyone inject anything into the spinal canal. One of the males had not been able to work, was only 40 and verging on bankruptcy. I have so many days that I can not walk or get out of bed for pain but I will put my last breath into helping those who suffer and try to get the word out there that we do exist and about Arachnoiditis. My youngest member is 38 and my oldest is 83.

 

I spoke to Bernie Banton and he was a wonderful man, so sick but still had the time to talk to me and I went to see Christopher Reeve and these people give you the courage to go on and fight for what is right

 

I wish you luck in your new position as Prime Minister and I give you full points for standing there and speaking up about your beliefs as a Christian.

 

Maureen McLean’

President/Secretary/Webmaster

AASANSW.Inc

 

PS. As you can see I sent this some time ago to your Canberra Address and registered it and got a card back to say it had been received but never received an answer. Are Arachnoiditis sufferers not important enough Mr Rudd?. We live in chronic pain, filled up with Morphine etc, and no one knows we exist, even the hospitals ask me what is it?

 

Coming up the reply from Mr Rudd’s office after one year of waiting for a reply

 

OFFICE OF THE PRIME MINISTER CANBERRA

 

Ms Maureen McLean

President/Secretary

Australian Arachnoiditis Sufferers Association NSW Inc.

46 Malvern Road

GLENWOOD NSW 2768

Dear Mrs McLean

 

Thank you for your letter of 12 November 2008 to the Prime Minister regarding Arachnoiditis. The Prime Minister has asked me to reply on his behalf and I apologise for the delay in responding (ONLY ONE YEAR).

 

I am sorry to hear about your condition and I can only imagine how difficult it must be for you and your family. As you note, until the advent of Magnetic Resonance Imaging (MRI) techniques, Myeolography using contrast dyes essentially remained the only method of imaging available to doctors to visualise the spine.

 

The package inserts which accompanied the contrast dyes used in myelography warned doctors of the possibility of Arachnoiditis and recommended that the product be removed by aspiration after the myelographic procedure. Today, MRI provides an alternative to the use of dyes and myelography.

 

Regarding your request to have Arachnoiditis listed as a notifiable disease, the National Notifiable Diseases Surveillance System )NNDSS) coordinates national surveillance of fifty notifiable diseases. all of the diseases on the notifiable listing are communicable, which means they are transmitted from an infected person or animal to another person or animal. Some of the notifiable diseases are passed on by direct or indirect contact with infected persons or with their excretions. As Arachnoiditis is not a communicable disease, it is no appropriate to have it added to the NNDSS register

 

If you are concerned about the treatment you received that may have led to Arachnoiditis, I would invite you to contact the Healthcare Complaints Commission in NSW. The Commission acts to protect public health and safety by resolving, investigating and prosecuting complaints about health care. The Commission can be contacted on 1800 043 159.

 

Than you again for taking the time to write to the Prime Minister and explain some of the causes, factors and effects of Arachnoiditis. I have copied this letter to Minister of Health and Ageing for her information.
Yours Sincerely

Ankit Kumar
I was writing for the whole association and everyone who had Arachnoiditis, why did he only answer to me? Has he ever tried to get a bottle of oil clean on the inside and outside, in other words does he really believe that they could aspirate all the oil if they even bothered to do it all and why did it take one year to reply to my letter of which I had to send a 2nd reminder that I had written it and who is Ankit Kumar? I have never heard of him. I have heard of Kevin Rudd but not Ankit Kumar. Is he Australia’s expert on Arachnoiditis.

AUSTRALIAN GOVERNMENT

Department of Health and Ageing

Mrs Maureen McLean

President

Australian Arachnoiditis Sufferers Association NSW Inc.

houdie@bigpond.com
Dear Mrs McLean

 

Thank you for your correspondence of 8 March 2010 to the Minister for Health and Ageing, the Hon Nicola Roxon MP, concerning Arachnoiditis. The Minister has asked me to reply on her behalf.

 

I understand the consequences of Arachnoiditis can be devastating to those affected, irrespective of the cause of the condition.

 

I am sorry to hear of the difficulties you have experienced in trying find appropriate medical care locally, but pleased that you are receiving specialist care through Professor Michael Cousins, one of Australia’s leading pain physicians.

 

I appreciate your wish to see Arachnoiditis deemed a reportable disease to confirm the number of individuals affected and the variety of causes. As advised in previous correspondence from the Department of Prime Minister and Cabinet, at present there is a system in place only for the mandatory reporting of infectious diseases in Australia. There is currently no system to track the incidence of the majority of chronic conditions in Australia, including Arachnoiditis.

 

Prevalence data for a range of conditions is, however, collected every 2-3 years through the National Health Survey (NHS) on a wide range of health issues and to enable changes in health to be monitored over time. According to the NHS, the prevalence of Arachnoiditis has remained steady in recent years, with 0.1%of respondents reporting that they had Arachnoiditis in surveys conducted in 2001, 2004/05 and 2007/8.

 

While there is no system in place to support broad incidence reporting in this area, it is important that people report their condition if they believe that medical treatments may have caused Arachnoiditis. There are established systems that track, and enable the investigation of, adverse outcomes in health care. As the President of the Australian Arachnoiditis Sufferers Association in NSW you are in a unique position to encourage your members to report their condition, as appropriate, under the following systems:

 

1..The Health Care Complaints Commission as you are aware, the Commission acts to protect public health and safety by resolving, investigating and prosecuting complaints about health care. Any of your members who are concerned that the medical treatment they received may have led to Arachnoiditis can contact the Commission in NSW on 1800 043 159 (free call).

2..The Therapeutic Goods Administration (TGA): adverse outcomes related to medicines may be reported to the TGA by health care professionals and consumers. Details of how to do this are available on the following website: www.tga.gov.au Under this system, reporting the development of Arachnoiditis following use of certain medicines (for example, as mentioned in your letter, the injection of cortisone directly into the spinal canal) will help to build up a profile of causes of Arachnoiditis.

 

Your letter also raised concerns about the cost of medicines such as LYRICA (Pregabalin) and RIVOTRIL (Clonazapam). The Australian Government subsidises the cost of prescription medicines through the Pharmaceutical Benefits Scheme (PBS), but LYRICA is not listed on the PBS and RIVOTRIL is listed with certain restrictions.

 

Medicines are listed on the PBS on the advice of an independent, expert advisory body known as the Pharmaceutical Advisory Committee (PBAC), whose membership comprised doctors, other health professionals and a consumer representative. The PBAC considers applications from companies for PBS listing having regard to the clinical effectiveness and cost-effectiveness (value-for-money) of medicines, in comparison with other available treatments. Companies cannot be compelled to apply for PBS listing.

 

At its July 2005 meeting, the PBAC recommended the listing of LYRICA for the treatment of other conditions. Therefore, it is not in a position to recommend that it be made available through the PBS for any indications other than partial epileptic seizures. The Government cannot list a medicine on the PBS without a recommendation to list from PBAC.

 

However, the PBAC would accept a submission to list LYRICA on the PBS at any time. You, your medical practitioner or association may wish to contact the manufacturer of LYRICA directly to determine its intentions of submitting an application to the PBAC for the PBS listing of this medicine for treatment of your condition(s).

 

The manufacturer would also be able to advise whether any cheaper purchase options might be available and whether the medicine could be provided for individual compassionate use.

the details are as follows:
Pfizer Limited Telephone: (02) 9850 3333

38-42 Wharf Road Facsimile: (02) 9858 1347

WEST RYDE NSW 2114

 

I commend your ongoing commitment to providing advice and support to those affected by Arachnoiditis, and I wish you every success in your continuing efforts on behalf of those affected by this disabling condition.
Yours sincerely

Leo Kennedy

Assistant Secretary

Chronic Disease Branch

22nd April 2010
I was very disappointed in Mr Rudd taking so long to have a staff member reply to my letter, which I am not naive enough to believe that he even seen it. It was obvious by the contents of the reply that the person writing it had no concept of Arachnoiditis. On the other hand I was pleased with the reply from the Chronic Disease Branch and surprised to know that they did do a count every so many years but how can they do a count of Arachnoiditis sufferers when so many can not get a diagnosis, especially one’s who got this chronic disease from a Myodil injection. I have an excellent GP now and I told him about sufferer’s informing their GP’s and the GP’s reporting it and he replied “If I knew where to report it I certainly would”. So that is a question I will have to find an answer to as I am quite sure that the government count is a way lot lower than they realise. It was interesting and not surprising that the drug companies had the control over the pricing of the many opiates we have to take for our pain. It is not that easy that we can just take one tablet and that helps our problem but most of us have a boxful of tablets that even on pensioner’s prices still cost so much and we can’t go without them or we would never handle our pain. My biggest concern is the easy use of Cortisone injections into the spinal canal. Member’s of the public should be warned that having a cortisone injection into the spinal canal can cause Arachnoiditis. Incurable and chronic pain. Another concern of myself and our committee is that there are so many more sufferers of Arachnoiditis out there that do not know what is wrong with them and we need to find them.

 

LYRICA WENT ON THE PBS FEBRUARY 2013