The purpose of this site is to inform the public, sufferers and their families about Adhesive Arachnoiditis.
The main purpose of our website is to provide help and information about Adhesive Arachnoiditis to the general public and Arachnoiditis sufferers. This website will grow as more information is added in the future and hopefully report any research and news that may be of interest to other sufferers.
A secondary purpose is to provide a forum for support so fellow sufferers can post information and news about the problems they face living with Arachnoiditis. Please also look us up on www.Facebook.com and Australian Arachnoiditis Sufferers.
If you know anyone who has had a myelogram, oil based, (Myodil) or water based or an Epidural and has chronic pain, restless legs symptoms, unexplained pain and can not get a diagnosis from the doctor to what the symptoms are please call one of the committee we may be able to help by talking to you or your family member or friend and by realizing you are not alone with debilitating pain that alone is a great comfort to many. We are a support group, there to support each other, make friends and understand each other’s pain.
We have been going nearly ten years now and I had wanted to start up an association to find other people with the same disease I had and the association has just grown and grown with phone calls and emails from all over the world, people desperate for help or to compare symptoms and that it is not all in their head, our saddest one in 2012 was from a mother whose 5yr old had been diagnosed with Arachnoiditis, as we all know our friends and relatives can be sympathetic but you have to have the disease to understand what we are going through and there seems to be so many phases to it and the scary part is that there is no cure and no one caring about finding one, are they waiting until we are all dead. They will have a long wait. I have people who are only in their mid thirties calling me.
My main object for this Association is to find the people out there who are suffering from this debilitating disease Adhesive Arachnoiditis and do not know what is wrong with them and can not get an honest answer from their specialists who have taken an oath to look after the sick and yet they avoid telling us what is wrong with us. I know there is no cure but to have someone there who is an expert who can help you through this chronic pain that no human being should have to suffer, We were not told of the consequences of this terrible dye and every day one of our sufferers contemplate suicide, they have lost their families, they can not work and live in a life of hell trying to struggle on a pension. Is there no one out there who will help us and be honest with us, specialists that we thought we could trust and put our lives in their hands and now they want nothing to do with us. Without our G.Ps and Pain Management Specialists we would be lost with this chronic pain and no one to help us cope with it.
We are a non-profit volunteer self help group, registered with the Department of Fair Trading, and have an ABN and taxation number. We are exempt from tax and are eligible with the taxation dept for gifts and donation.
This Association is not just for sufferers of Adhesive Arachnoiditis but for their families, friends. carer’s who go through this with us and anyone suffering chronic pain who would like to come along, listen to the meeting, have a chat and make friends. Our meetings are always held at Blacktown RSL, always on a Sunday and held at 12.30pm. We have quarterly meetings. Usually February, May (our AGM) August and November. Any able bodied person who would like to donate some of their time are more than welcome. The more we grow the more help we need.
A SHORT EXPLANATION OF ADHESIVE ARACHNOIDITIS FOR FAMILY AND FRIENDS
Arachnoiditis is a condition which begins with the inflammation of the Arachnoid Membrane covering the spinal canal and brain, this can cause a gradual build up of fibrotic scar tissue which disrupts the flow of cerebro spinal fluid (CSF) around the nerves and deprives them of nutrition.
The early symptoms of this condition can be all or some of the following:
Severe low back and leg pain, numbness and chronic pain in leg(s) and feet, burning sensation, especially in the legs and feet, bladder and bowel dysfunction and severe headaches. Many patients with this condition complain of the feeling of walking on broken glass. Often there are no outward signs of the condition and the sufferers look deceptively normal; as the condition progress’s the symptoms may increase and become more permanent. Some patients use wheel chairs, and most patients with Arachnoiditis have to give up work completely which leads to a feeling of uselessness and loneliness at also losing the strength to keep up a social life. Known causes of the condition are the following: Tuberculosis, Meningitis, Spinal Tumour’s, Abscesses, Spinal Surgery or Trauma BUT BY FAR THE LARGEST SINGLE CAUSE: is medical intervention such as Myelograms using Myodil Dye, even water based Myelograms are now know not to be safe, Radiculargrams, Epidurals (Steroids) and Lumbar Punctures and Cortisone Injections into the spinal canal.
Most of this definition was posted on Gateway to Neurology of Massachusetts General Hospital.
GOOD WEBSITES TO LOOK UP FOR ADHESIVE ARACHNOIDITIS
We have been lucky enough to get Renee Goossens to agree to be a patron of our association. It is an honour to have Renee as a Patron. Renee is an author who has just released another book called Pain Management: learning to live with pain, she also has published another book called Belonging; which is an amazing story of her life. Renee comes from quite a famous family, her father was Eugene Goossens a conductor at the Conservatorium of Music who was very famous in Sydney and upon his idea the Sydney Opera House was built. Renee also sufferers from Arachnoiditis and is in a wheelchair and is an inspiration to all of us. If you wish to buy a copy of her Pain Management book you will find it at Big W. and she does various talks at local libraries and out of town ones. You will find Renee’s web page on our links page and details of her books.
Donations have slowed down for our fighting fund so I am putting the Assoc. banking details on our web site so you can pay it online or in any bank. The details are: COMMON WEALTH BANK – AUSTRALIAN ARACHNOIDITIS SUFFERERS ASSOCIATION NSW BSB 062 585 Account Number 10481519. Please put your name on it so the treasurer will know who to let me know who to send the receipt to.
I would like to remind members that the 2013-2014 fees are due 31st March 2013. The single fee is still $20.00 and $30.00 for 2. e.g. Husband and wife or carer and sufferer, even a family member and sufferer, whichever way you wish. If you still wish to get the newsletter you will have to renew. There will be no more newsletters sent out to members who have not renewed. You do not have to be a member to come to the meetings, but you have to be a member to have input and vote and receive newsletters.
The next meeting will be on Sunday 18th May, 2014 at the Blacktown RSL, Second Street. It will held in the Orana Room at 12.30pm. This will be an AGM so if you want to vote please attend and you must be a paid up member.
Once again, there are member’s who could not be bothered coming or don’t feel well enough. I have been setting up meetings and holding them for nearly 10 and it is getting harder and harder each year as the arachnoiditis progressively gets worse so whether I feel ill or not the work has to be done so please for just 4 Sundays a year try and make an effort, don’t make me feel all my work is for nothing. There are member’s who come from so far away, etc. QLD, VIC, Gunnedah and Central and South Coast but Sydney member’s think it is too far. Why?
We have a section now where a designated member can tell their story and it has been put to me that we set aside a time for member’s to discuss their pain and I think that this is a an excellent idea as someone may come up with something that may help and also it helps to talk about it and share with others. You don’t have to be at the meeting, write it out and I will read it for. A trouble shared is a trouble halved. We had a member tell her story at our AGM and members asked questions about their own concerns and it was one of the best meetings we have had.
We are growing with members all over Australia and I send newsletters out after each meeting although I am getting slower now as I get older and sicker but I like to keep everyone up with any news I have and what has happened at the meeting and if you have anything that you want put in please email me or phone and if suitable I will put it in. We have a sick list for those in hospital or have been in and if you don’t let me know I can’t put you in so please keep me informed. Everyone is interested in what is happening to our members. This is what we are. A SUPPORT GROUP. A lot of work goes into the meetings and some committee members travel quite some distance to get to the meetings. We have one who comes down from Gunnedah so come on you South Coasters, Central Coasters and city dwellers come and join us. The meeting is for you! Keep the Association going and growing, don’t let yourself or our members down. Remember when you cried out for help. Club Phone 02 42 951811. Please try to attend. We have been going 9 years now! We also have a wonderful committee member, our Promotion Officer in Queensland,who puts his heart and soul into the association. We are a support group and that also means to support each other, so come and meet each other at the meetings and if you want to meet someone in your area contact me and I will see if there are any sufferers close by.
Our FIGHTING FUND has come to a very slow crawl, please, even a few dollars to get the first one’s through. We need to see justice. We have no cure only justice so don’t let this go. Even if you can donate stamps etc. it will all be a help. One idea a member came up with was arranging with the bank or if you know how to do PAY ANYONE through your bank account, We have a married couple both member’s who have arranged to have $20.00 a fortnight put into the Associations bank account. It is amazing how this amount grows and the amount does not matter, it can be $5.00 or $500.00 whatever you can afford but if you are one of the one’s going through please help by making a donation of at least $250.00.
We have set up our FIGHTING FUND SO we can pay for an expert to go to court and as the fighting fund puts it, fight for us, but we need ideas on how to get at least $30.000 into this fund and it is going to include every member, even members not going through. Those with a heart and can spare a couple of dollars to help the others out. There have been some concerns that the donations will not go to an expert but we will also need it to help our members fight this terrible thing that has destroyed our lives. We need to fight to get satisfaction for what has been done to us and hundreds of others who do not know what is wrong with them, but by us getting the word out there they will find out. So please, ideas and help please!!!!! This is especially urgent now that we have our first one going through and hopefully the 2nd one will follow close behind
You would be pleased to know that since the Roundtable talk at Parliament House in Canberra that Ruth and I attended our membership has shot ahead, we now have members in WA, SA, VIC, QLD, TASMANIA and of course NSW, it would be nice if all the people who email me or phone for help would also join the Association, it is only $20.00 a year for one person or $30.00 for 2 as I put a lot of time into helping people who don’t join. A lot of people need help and some are in a position to help others so please if you can help send your donations to our treasurer Mark or put them into the banking details on our web site and help us to help others. PLEASE HELP US TO HELP YOU! If you would like to be a contact in your state please call me. We are a support group so lets support each other.
You will find the list of your Committee on the Committee Page.
Once again our banking details if you want to donate over the net or over the counter of the bank are : COMMONWEALTH BANK – AUSTRALIAN ARACHNOIDITIS SUFFERERS ASSOCIATION NSW – BSB 062 585 – Account Number 10481519