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WELCOME TO THE AUSTRALIAN ARACHNOIDITIS SUFFERERS ASSOCIATION NSW WEBSITE.

 

AUSTRALIAN ARACHNOIDITIS SUFFERERS ASSOCIATION NEW SOUTH WALES NEWSLETTERS

 

MINUTES FOR MEETING AT AGM held on 14th May 2010, at the Blacktown RSL

 

APOLOGIES:

Sandra Porter, Renee Goossens, Don Willcox, Bernadette Clarke, Bev Wellington, Bill and Margaret Hillcoat, Vivienne Johnstone, Les Johnstone, Charmiane Poulton

PRESENT

Heather Boorman, Ian Boorman, Fred De Jonge, Elizabeth Partridge, Bruce, Joe Murray, Bob McLean, Maureen McLean, Susan Michaels, John Brkieh, Martin Haack, Amir Nazifi, Ruth Ahrens, Mark Ahrens

 

The meeting started at 12.45pm

 

Minutes from the last meeting were discussed and also the meeting that was held at Warilla. It was said that it was disapointing that after all the work that Bev Wellington had put into advertising it apart from Bev herself the nearest local to come were Bronwynne and Jim McMahon. Although it was a good meeting and we got 3 new members who came from a long way away to attend. Maureen said as long as one person was helped it was worthwhile. We discussed the problems with Lyrica and the price of it and Maureen said she would enclose a letter from the Minister of Health in each newsletter discussing this problem.

Joe Murray was given a hand from everyone for attending the meeting, his first one since losing his lovely wife Iris and it was said how she was missed. We said that she would be up there watching us.

A sympathy card was sent to Sandra Porter for the loss of her mother and although sick herself she has gone to care for her father.

Everyone was thanked for attending the meetings over the year and it was the end of our 5th year as an association on the 31st March 2010.

Member’s were asked if they changed their address, email or phone number to please let Maureen know or if they were in hospital or most important if a member passed away could someone let the committee know.

 

CHRONIC PAIN:

It looks like chronic pain is being recongnised at last with a couple of summits being held in the last couple of months. There was one in Canberra for one day and then one at Broadbeach which went from Sunday through to the end of the week. Members of the Chronic Pain Association could attend on the Sunday with different workshops being held but the rest of the week was for medics. Prof. Michael Cousins was the chairman of the Canberra Summit and was interviewed by Kerry O’Brien of the Australian Broadcasting Corporation. This was read to the members. (If anyone would like a copy please contact me).

 

DONATIONS:

All those who donated over the financial year were thanked. Every cent counts no matter how little or how big we really appreciate it. We thanked. A & N Ambrose, Viv and Les Johnston, Don Willcox, Margaret Hillen, Bill Hillcoat, Violet Wilson. Heather and Ian Boorman donate through PayAnyOne into our Commonwealth Bank Account. This is a great way to do it as it mounts up for the Association and is not missed as much by the donor. Maureen had a phone call from Don Willcox who was reading the newsletter about this nice guy and said I wondered who it was and then realized it was me!. I hope it cheered him up because he is a nice guy. Maureen has applied for a grant for around $1600.00 and we will find out in August if we are successful.

 

SOLICITORS:

I emailed Danny and asked him if he had any news from Professor Stoodley as members were asking and I had nothing to tell them. I got an email on Wednesday.

Dear Professor

I have been receiving a number of phone calls from clients asking for a progress update on the report linking Myodil with Arachnoiditis. The Professor replied and said ‘Dear Danny, I am working on the report and expect to have it completed by the end of June’.

Regards, Marcus Stoodley

So then Danny replied to me and asked if I would put it in my newsletters so all involved could be made aware of it. So we wait another month and see what happens. Hopefully we will have our first one in court before Xmas of 2010 Ruth has also been contacting the solicitors.

 

TREASURER’S REPORT:

The Treasurer gave his annual report.

 

OTHER BUSINESS:

Maureen thanked the committee for all their help and hard work, especially the travelling they do to get to meetings, Gunnedah, Rutherford, North of Newcastle, South Coast and of course the Central Coast. We traveled 3 hours down to Warilla and 3 hours back again. Bev Wellington had done a wonderful job advertising and contacting people and no locals turned up. We got 3 new members, Canberra, Bateman’s Bay, and Horsley and Bronwynne and Jim McMahon came up from Worrigee.

Maureen dismissed the committee for 2009-2010 and asked members to vote in a committee for 2010-2011. Members must remember that apart from the Treasurer who does a wonderful job the rest of the committee suffer from Arachnoiditis and we are not getting any younger as I keep reminding the solicitors, and at least but not last Maureen thanked her husband for his help in driving her all over the place and helping dispatch all the newsletters

Maureen then asked for nominations for PRESIDENT/SECRETARY.

 

Maureen McLean was voted in as President/Secretary by Heather Boorman and seconded by Elizabeth Partridge

 

Maureen then asked for nominations for VICE PRESIDENT

 

Ruth Ahrens was voted in as Vice President by Amir Nazifi and seconded by Fred De Jong.

 

Maureen then asked for nominations for the position as Treasurer. Mark Ahrens was nominated by John Brkieh and seconded by Ian Boorman.

 

Maureen asked for nominations for PR for the South Coast. Bev. Wellington was nominated in by Amir Nazifi and seconded by John Brkieh.

 

Maureen then asked for nominations for PR Officer for Sth QLD and Nth NSW. Gil May was voted in by Proxy by Maureen McLean and seconded by Ruth Ahrens.

 

Maureen asked for nominations for PR for Sth and Central QLD. Alan Wood was voted in by Proxy by Heather Boorman and seconded by Susan Michaels.

 

Corrine had offered her help sometime earlier and had written a letter nominating herself as PR Officer for Cairns. She was nominated by Amir Nazifi and seconded by Ian Boorman and Maureen said that it was hoped by the committee that sub committee’s would be started for those that could not get to meetings. Corrine has done a really nice flyer and if anyone wants one to put up in their local library or shopping centre just get in touch with Corrine or Maureen but you must sign your own name and contact at the bottom, you may pass them on if you wish. Maureen welcomed in the new committee for 2010-2011 and hoped that this would be the year we would see something happen.

 

The meeting finished at 2.40am.

NEWSLETTER FOR MEETING HELD AT BLACKTOWN RSL on 17th February, 2009

 

The topic for the meeting was itching

 

Previous minutes were read and I spoke about how pleased I was with Stephen and Amanda and how surprised Stephen was to see how many people at the meeting actually had Arachnoiditis.

 

Minutes from last meeting

At the meeting I talked about the side effects of Arachnoiditis, there are so many, but strangely enough in the last few weeks there have been a few of us members suffering from severe itching and in one member’s case it was very embarrassing so that is why I decided to make itching the topic for this meeting. I had a member ring and tell me her story about her embarrassing day at the hairdresser’s due to itching, so told her I had a severe itchy day the day before, scratching my head, back arms and legs. I felt like I had fleas. Then I was emailing another member and telling her our two stories and she emailed back and said ‘You wouldn’t believe it but I am just about to go to the doctor because I can’t itching. Ruth and I discussed it, was it the same opiates, but I know that one of the member’s was not on the same opiates as myself and the other member. I read portions of an article about itching and Arachnoiditis as I feel there are others out there suffering from itching as well as we found when one of the member’s clasped his hands to his head and went ‘Oh no!’ he had had severe itching and the doctor suggested nits so he shaved his hair off. Please don’t shave your hair off, it is a side effect.

Arachnoiditis – spinal cord injury with intractable pain

Portions obtained from the ASAMS site

Definition

According to Charles Burton, Senior Medical Director of the Institute of the Lower Back and Neck care, Minneapolis, adhesive arachnoiditis represents the most severe form of inflammatory disease process involving the pia-arachnoid membranes of the brain and spinal canal. The most common causes of incapacitating clinically significant adhesive arachnoiditis are foreign substances introduced into the subarachnoid space (e.g.) for Myelograms and epidural injections); trauma due to motor vehicle accidents; spinal surgery; infections such as Meningitis.

Arachnoiditis manifests itself with chronic intractable pain as well as many sensory, motor, autonomic and systemic symptoms. Arachnoiditis can progress to paraplegia; other complications include Cauda Equina Syndrome (CES) loss of bladder, bowel and sexual function; Syringomyelia (cavitations in the spinal cord); arachnoid cysts in the spinal canal. It is, in essence, a form of spinal injury for which there is presently no known cure.

Does it really exist?

Despite being listed as a recognised disease by the National Institutes of Health and the National Organisation of Rare Diseases, to many physicians Arachnoiditis is an inknown condition. To some that have been informed about it, there is a debate that it even exists. Attempts to discount Arachnoiditis as an entity do not take into consideration that in some instances, the essential problem may be root damage rather than scarring. The presence of scar tissue in the spinal canal is not always associated with the symptoms and primary nerve root damage may not be demonstrated by available imaging techniques. Furthermore, there is no specific diagnostic marker for the entity of Arachnoiditis nor for root damage. Though meant to function like a fine tuned instrument, the nervous system of an Arachnoiditis sufferer becomes permanently dysfunctional. Nerves in the central area release chemicals that signal the brain by a two way communication system which acts to transmit messages. In Arachnoiditis sufferers the messages that something is wrong continue without letup. In cases of acute pain, patients are generally able to cope knowing that in time the pain will cease. Chronic Arachnoiditis pain is different in that it continues endlessly, disrupting the lives of sufferers and their families.

Other symptoms (Including itching).

Other symptoms are numbness, loss of heat sensation, tingling “pins and needles” and intolerable itching. It is a challenge for patients to desribe some of the bizarre neurological sensations they experience. Such descriptions as “my body is short circuiting”, I have vibratory sensations like a cat purring, that move around, “I feel as if water is running down the side of my leg” are 3 examples

Muscle disturbance may include spasm, cramps, twitching, involuntary jerking and weakness. There may be headaches, poor concentration, memory impairment, vertigo, visual problems and insomnia. Excessive fatigue is common and very debilitating. Physical, mental and emotional stress, prolonging sitting and standing and weather changes can exacerbate the symptoms, but often there is no obvious cause for what appears to be an acute flare up of the chronic inflammation resulting in a flu-like illness lasting from days to several weeks. Only the patient really knows what to experience or another sufferer. Family members and carer’s living in the same house may also understand to a certain degree.

Harmful changes

Entrapment and distortion of blood vessels within the spinal canal result in diminished nutrients being delivered to the spinal canal and nerve roots. Lack of oxygena to nerve tissue is known to give rise to constant and incapacitating pain as well as progressive neurological impairment. Your doctor may tell you that you have a mild case of Arachnoiditis as the MRI may indicate that the Arachnoiditis is of a mild nature, the experience of pain may be disabling to the sufferer even in the early stages. Therefore the tendency of some specialists to categorise pain by intensity from mild to severe based on the stage of Arachnoiditis visualized on an MRI can lead to under treatment of the pain. It is imperative for doctors to understand that the degree of pain may not correlate with what is visualized on an MRI.

The patient is the best judge of the degree of pain they are experiencing

For those who have a documented diagnosis of Arachnoiditis there may be a long and frustrating search to find someone who understands it and knows how to treat it. In addition, among doctors who do have knowledge about the disease, there may be a reluctance to treat the pain with Opoids because of concerns that the patient may become addicted (it is my belief that the drug goes to the pain, if you have no pain then you could become addicted). This motivates some doctors to refuse to prescribe narcotics at all or to prescribe an inadequate dosage that not effectively control the pain. Needless to say many sufferers have suffered needless pain and disability while searching for a compassionate doctor willing to provide available and effective pain management.

In response to a growing awareness of the benefits of opoids in management, physicians understanding about the difference in the effects on body chemistry of chronic pain patients and drug addicts is increasing. A chronic pain patients may become dependant on the narcotic medication for pain relief. That is very different from becoming addicted. As doctors are learning not only how to diagnose and treat Arachnoiditis but also to understand the dynamics of chronic pain and the benificial affects of Opoids for their chronic pain patients, misunderstandings related to addiction and tolerance in chronic pain patients are being corrected. Adddressing the pain adequate and effective pain medication will help to reduce the suicide rate.

Other effects

Secondary effects of Arachnoiditis are economic, social and political consequences. The disability is permanent and progressive. The ability to work decreases until careers come to a halt and mutual support becomes the only form of ‘work’ possible for many. This is costly to terms of lost productivity, medical expenses and disability payments as the majority of these people are disabled during most of their productive years. In addition to their experience of pain Arachnoiditis sufferers are often misunderstood with well meaning friends and family saying ‘aren’t you looking well’ or cruelly misdiagnosed. Perhaps lack of understanding and sympathy is due to the belief that Arachnoiditis is a rare disorder, or that is simply a variant of back pain which is experience by everyone at some stage of their lives. (If you tell your well meaning friends you have a bad back you get all the bad back stories, so you tell the truth and tell them you have an incurable spinal disease).

Perspective:

The prognosis for Arachnoiditis sufferers may appear grim. Yet it need not all be doom and gloom.

We are all familiar with the Serenity Prayer:

God grant me the Serenity to accept the things I cannot change, the Courage to change the things I can, and the Wisdom to know the difference.

Sufferers must accept there is no cure. There are many things that need to be changed to improve the situation as a whole and we must assist in any way possible in order to make such changes a reality so that we can derive some benefit and to ensure that prevention of this disease is achieved. We must get the message through that there are to be no needles inserted into the spinal canal. In the last few weeks I have had so many call me having just been diagnosed with Arachnoiditis after having been injected with Cortisone into the spinal canal.

FIGHTING FUND

The treasurer tells us our fighting fund is growing but we are a long way from our goal, if we are to help others we need more donations items to raffle, anything you can think of to raise money. We have a lovely pensioner down the south coast who regularly sends us $50.00. She is not doing litigation but tells me she can’t take it with her.

 

KEVIN TARAWHITI:

Kevin gave a talk and showed a video on alternative health which was about a fruit called Mangosteen. It was very interesting and helpful and when you get like us you will try anything to help you ease the pain and feel better. Kevin explained that there are over 130 health benefits that come from the skin of the fruit. Linda was diagnosed in the 80′s with Ovarian Cancer and the cancer went into remission and helped her with her irritable bowel syndrome. The juice is $50.00 a bottle at 750mls you only take 30mls a day and you have to sip it, we all got a sample and you sip it like red wine. Ruth and Mark bought the fruit itself and said it beautiful, halfway between a mango and passion fruit. If anyone is interested in trying it call Kevin on 02 9623 6809 or 0401 047208 or you can email Kevin at kevin4evr@bigpond.com and have a chat to him it. Website: www.kevintara.whymangosteen.com.

SOLICITORS:

I have spoken with Amanda and she tells me that all is going well. You must remember that going ahead with litigation must be your decision entirely. The association is here to wupport you for your Arachnoiditis condition, we are not solicitors so can not advise you on any legal points, you must talk to the solicitors for that. If anyone calls you asking queations refer them to your solicitor.

DALLAS SMART:

I had an email from Dallas last week, he was unaware that I had already mentioned what had happened to him when he went to see David but I have mentioned it a couple of times but not his name as some people do not like their name mentioned. Dallas had an appointment with David and the first time Dallas called me about this he had said that he had called the office and checked his appointment and been given an earlier one but David had not been informed. David was short and sharp with him and told him that his doctor was dead and he could not remember his nurses name which I believe none of us would. Dallas had told me his story and I believe he had a good case but as Amanda and David have told me the buck stops with David. I have argued a couple of cases but once David says NO that is it, and since Dallas told me his story I have said at the meeting and in the newsletter to call and verify your time and that David knows you are coming no matter how far away you live. In the past few months things have been moving a lot quicker and a lot smoother and I put that down to Amanda’s competence. She is easy to talk to and very helpful.

BUSINESS:

Ruth is going to take Stan Fraser’s certificate up to him and I would like to pass a motion that Don Willcox is given Life Membership of the Australian Arachnoiditis Sufferers Association. Don has given such generous donations over our 4 years that we could not have kept going without him. Don suffers from Parkinson’s disease as well as Arachnoiditis and never complains. He is not doing litigation but wants to help us. Don was a science teacher at Strathfield Girls High when he was struck down with Parkinson’s. We are so grateful to him and this is the only way we can thank him. Maureen Nominated and Bev Wellington seconded the motion. Wendy Smith handed in her resignation due to illness.

ANNUAL GENERAL MEETING

Our next meeting is on Sunday 17th May; 12.30pm at Blacktown RSL, Second Street in the Orana Room. It is on the index page of the website and I will be sending out a newsletter with renewal forms in for those who can not attend. If you wish to be nominated for a position on the committee please send in your name and position you wish to be nominated for and if you are unable to attend send in your proxy form in before the meeting. The meeting finished at 2.30pm

NEWSLETTER FOR MEETING HELD AT BLACKTOWN RSL on 24th October, 2008

MEETING

The next meeting is most important as I have arranged for Stephen Smart of Stephen Smart and Associates to come as our guest speaker and he will be bringing another solicitor with him, Amanda. It is a big thing to have a solicitor to come to our meetings so please everyone who is not too sick that day please come to the meeting that is for you to have your questions answered and settle any doubts or queries in your mind. The barrister is doing affidavits for the first and second group now so things are moving. The affidavits are for extension of time as all of you will be aware that we are all out of time. The meeting is a Monday not a Sunday. It has been confirmed by the club and will be held at Blacktown RSL, Second Avenue, Blacktownm, 2148 at 12.30pm in the Orana Room. There is an all you can eat and a cafe so you can have a bite to eat before the meeting. Please make an effort to come and bring your friends and family, the more we have there the more the solicitors will see we mean business and want justice done for us.

CARER’S

Carer’s Association

Maureen discussed the position of Carer’s and without them most of us would be helpless and unable to cope with everyday chores. She focused on the job of our carer’s at the meeting. Forms were passed around for the Carer’s NSW Membership, plese join whether you are a carer or sufferer, a carer is free and if you are a sufferer tick individual and that is free also, you can make a donation if you wish from $10.00 up. It is tax refundable. Please when you fill in the form in where it says Organisation put Australian Arachnoiditis Sufferers Assoc. NSW Inc. We need to let as many Associations etc. know that we are here and you will get so much information from the Carer’s Association. They are an Association that are there for relatives and friends who are caring for people with a disability, mental health problem, chronic pain condition and frail and aged. They are a peak organisation for carers of NSW and the only state wide organisation that has carers as its primary focus. Each state would have it’s own carer’s association. They are a non-government, non-profit, non political organisation incorporated under the Associations Incorporation NSW, governed by a volunteer board of management. They are part of a national network of carer associations and work collaboratively to lead change and action for carer’s. The core work of the association is: Being the national/state/territory voice for carers: Research, policy development and advocacy: Carer services and programs. So please fill in your form and join the Carer’s Assoc. You receive magazines informing you of any changes by Centrelink if you are on a pension, you can voice your concerns which is what we need and all member’s to do so, not just one or two. I will be putting a membership form in the next lot of newsletters to go out as our carer’s need to be recognized and not kept in the background. Those in other states contact their local carer’s Associaton for registration forms.

History of Arachnoiditis

Most of us know a little about Arachnoiditis, some know more than others but if you read Dr Aldrete’s article on the internet we would be surprised to read that as far as medical history is known that it is likely that Arachnoiditis was present in the spines of some Egyptian Mummies estimated to have been buried some 5000 years ago in whom typical lesions of spinal tuberculosis was found. This dreadful disease is characterised by long standing inflammation of the two innermost layers of the sac surrounding the spinal cord which contains the cerbrospinal fluid, and not uncommonly expands the nerve roots, and the cauda equina, occasionally deforming the dural sac.

The Usual Causes of Spinal Arachnoiditis

Infections like Tuberculosis, Aids, Meningoccus.

Dyes used for Myelograms like Pantopaque, metrizamide, omnipaque, etc.

Blood entering the spinal sac, i.e. from subarachnoid hemorrage

Epidural blood patches, bleeding from anticoagulants, etc.

Spinal surgery, mostly from rents of the dura with blood entering the sac (this is most common today) direct nerve injury.

Irritant compounds injected into the sac such as hypertonic saline, phenol, methotexate, hyaluronidase, papain, etc.

Cauda equinoid and cauda equina syndromes are mild and moderate lesions located on the distal point of the spinal cord are truly varieties of Arachnoiditis, as well as syrinx (loss of most of the normal pattern and mapping of the spinal cord). Syringomyelia representing cavitary lesions, and pseudomeningocele consisting of secondary, thin, false sacs adhered to or behind the dura (usually containing some nerve roots) – all are different presentations of Arachnoiditis.

So after reading this article by Dr Aldrete an expert on Arachnoiditis you can see how careful the solicitor has to be as there are so many ways to get Arachnoiditis, you can also get Arachnoiditis from Meningitis, or Meningitis from Arachnoiditis which is what happened to me.

Treasurer

It was voted and passed by members that the Treasurer set up the Trust Fund, we had quite a few donations. Two of them quite large. One by a member going through and one by another who is not and has always been a great support to our Association. We have had a lot of smaller donations that are appreciated so much as we know that these people cannot afford it but want to help. I feel that if you are one of the one’s going through that you should help in some way. The President asked for a vote from members that some of the Association Funds be transferred into the Fighting Fund. So please keep the donations coming in. We have to get our strories out there so that we will never have to listen to ‘Arachnoiditis, what is that?, I have never heard of it’. So let ourselves be heard and let them know what Arachnoiditis is. Not just Myodil but all sorts, Cortisone, Water Based etc.

 

NEWSLETTER for MEETING HELD AT BLACKTOWN RSL on 24th November, 2008

Meeting started at 12.35pm

 

It was an excellent meeting and on behalf of the committee I would like to thank those who came and especially those who had to travel quite a distance, we even had a member from Victoria whom we were really pleased to see.
Renee Goossens

Renee discussed her book ‘Pain Management’ and offered it for sale to member’s for $20.00. Contact Maureen if you wish to buy one or Renee on 02 9958 6198, it has just been released in England and is full of useful tips and if you wish to know more about Renee’s books including ‘Belonging’ which is a riveting story of Renee’s life look up links on my website www.aasansw.org.au and click on links and reneegoossens. Renee’s latest book is full of useful tips for chronic pain.
AMANDA

Amanda is a new solicitor at Stephen Smart & Assoc. and is doing a wonderful job, she explained her postion there and that she was sorting out everything and trying to contact people who had had no word from the solicitors for some time and that anyone with questions could call her at anytime on 02 9264 9290 and that she had taken the place of Marie-Therese who had resigned. Her name is Amanda James and she is very easy to talk to.

 

Stephen then announced himself and explained where they were and at that time they had several people ready. Members were worried about costs and Stephen said not to worry about his costs. Stephen had said that we need an expert and named the person he was keen on. Stephen said he was willing to travel to talk to the expert. Stephen was asked about members from other states that they can not be going back and forward to Sydney, he said that they would be brought through to NSW. Some members were confused about Class action and Litigation. Stephen said it was Litigation not Class action as we are all different.
RAFFLE

Vivienne Johnston kindly put a hamper together and it was raffled and a member Heather from Victoria won it. The second prize was a bottle of wine donated by Ruth and Mark Ahrens. We made almost $100.00 from the raffle which will go to the fighting fund.

 

SICK LIST

Renee was to go into hospital last week but the fax machine broke down, maybe someone should tell them about Alexander Graham Bell. Wendy is having a stimulator fitted. Good luck Wendy. Plenty of good cheer over Xmas. Help the pain!!!!!!!

This information in the following discussion can be found on the web site COWFRA

ADHESIVE ARACHNOIDITIS

is an incurable inflammatory condition in 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 inknown.

 

TERMINOLOGY

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 (CFS) which flows around the brain and spinal cord, providing it with nutrients and oxygen.

INTRATHECAL

This term denotes a site inside the dura; i.e. inside the thecal sac, which compresses nerve roots and impairs their blood supply, leading the various symptoms as a result. Scar tissue may impede the normal flow of the 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.

CAUSES

The majority of Arachnoiditis cases iatrogenically, that is, are caused by medical intervention. It is helpful to divide the causes into 3 main groups.

 

Failed back surgery, Multiple Sclerosis, people will often get diagnosed with this when it is Arachnoiditis.

 

Cauda Equina Syndrome: acute Cauda Aquina Syndrome is a surgical emergency, loss of bladder/bowel function, saddle anesthesia (loss of sensation or tingling in the buttocks. Leg weakness and severe pain in the lower back and limbs. CES is basically a descriptive term for a set of symptoms. It may arise when there is a severe compression in the cauda equina, at the lower end of the spinal cord (acute causes include large disk prolapse) A chronic pain equivalent to CES may arise in Arachnoiditis.

 

MANAGEMENT

As explained above, Arachnoiditis is incurable, but there are a number of measures which may be helpful in managing symptoms. Sadly, in a survey in 2000 Sarah found that quite a high proportion of Arachnoiditis 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 the reluctance of medical personell to prescribe medication in the long term, especially narcotic painkillers, which are perceived as carrying a high risk addiction. In fact, narcotics used for pain relief (In comparison with recreational use) carry a very low 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. Behaviour 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 anaxiolytics 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 increased doses) that far exceeds that of narcotics. Usually, what the patient really requires is an increased dose of painkillers to relieve their anxiety or sleep disturbance. Families may also be wary of narcotic use, deeming it inappropriate, the stigma is still very much in evidence.

 

SUPPORT GROUPS are invaluable in allowing suffering to be in direct contact with others who are going through the same problems. This contact helps to reduce the strong sense of isolation which is extremely prevalent in people with a chronic illness. The majority of sufferers need to use a variety of medication in an attempt to reduce the pain.

 

OPIATES: Morphine, Pethidine which hospitals are trying to stop because of it’s addiction. Methadone (which I do not recommend having seen a friend on it for years) Tramadol etc.

 

ANTI INFLAMMATORY: e.g. Brufen, Mobic, Naproxen, Vioxx etc.

 

ANTI DEPRESSANT: Amitriptyline, also Prozac

 

ANTI CONVULSANT: Tegretol, Neurontin,Vigabatrin

 

MUSCLE RELAXANT: Baclofen, Robaxin, Dantrolene, Zanaflex

 

BENZODIAZEPINE: Diazepam, Clonazepam, Nitrazepam

 

DIURETICS: for fluid retention

 

QUININE: for muscle cramps, these are excellent for leg pain, especially at night.

 

OXYBUTININ: for bladder muscle instability

 

BETHANECOL: for urinary retention

 

ETIDRONATE: for prevention of bone loss in osteoporosis.

 

OUR FUTURE

One of the most tragic losses experienced by arachnoiditis patients is hope for the future. You can not plan ahead, you do not know what the next day will bring. Most see a bleak and pain filled existence centred around an unrelenting illness which is incurable. It is up to the individual to try and take their mind off their pain by finding some sort of activity to take their mind away from letting arachnoiditis take over their lives and that of their families. We all have up and down days so try something positive on the up days.

RUTH

Ruth wanted to impress on those at the meeting that if they had a superannuation and have never been paid out for TPD (Total Permanent Disablement) they should check their paperwork if they still have it or contact their super fund, if that does not work try getting a copy of the Trustee Deeds, you may be entitled to quite a bit of money and it worth looking into.

FIGHTING FUND

Thank you very much to those that have already donated to the Association Fighting Fund but we need to keep it moving, if we need to get an expert out or help members out we need to keep those pennies rolling in. We are building up a nice little fund but we need a lot more.

BANK DETAILS: if you wish to put it in yourself on the net through PAYANYONE or in to the Commonwealth Bank, the details are: AUSTRALIAN ARACHNOIDITIS SUFFERERS ASSOCIATION NSW – BSB 062 585 and the bank account is 10481519.

 

The next meeting will be at the Blacktown RSL, Second Street, Blacktown in the Orana Room at 12.30pm on February 14th 2010. Please come to the meetings, they are for you, if you have any ideas on what we could raffle at our meetings or if you know of someone who has an interesting topic who would like to be a guest speaker. See you at the meeting.

PLEASE RENEW BY 31ST MARCH 2010 AND KEEP THE ASSOCIATION GOING, IT IS YOUR ASSOCIATION AND A LOT OF WORK GOES INTO KEEPING IT GOING BUT WE CAN’T DO IT WITHOUT MEMBERS OR FUNDS. I WILL BE SENDING RENEWAL FORMS OUT END OF FEBRUARY – MARCH 2010. DON’T FORGET THOSE DONATIONS!!!!!!!