AUSTRALIAN ARACHNOIDITIS SUFFERERS ASSOCIATION NSW

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MAGNETIC MAGIC Written by Renee Goossens

There has been a vogue in recent years for the production and experiment with magnets imbedded in material and in belts worn around the area in pain (back belts, shoulder braces) as well as magnet filled mattress overlays. Some people swear by the wearing of bracelets which have magnets within them. Indeed we could say that what is one century's mainstream method of healing is another's quackery - if you turn to the works of Mesmer and animal magnetism, should this be an area of your interest. However, in terms of pain, magnets do have their use and I will come to that presently.

As an empirical study has given satisfactory 'medical based evidence' as to whether these devices are effective or not, it is your choice to spend money on expirimentation. If you do try, try one of the advertising 'money back guarantee' if you are not satisfied. Mainly based on anecdotal evidence, patients have praised the results. This could be due to some faith in the patient's belief in the person who recommended the product or to a 'placebo' *response. (*one with no proven value other than comfort, reason unknown.

There is a definite but rather unusual use for a magnet which my medical advisors recommended whilst I was living in France which forms an important part of modern technology.

You may be familiar with the TENS machine. TENS is an acronym for transcutaneous electronic nerve stimulation. Machines which are portable and about the size of a small laptop computer (some are available which are even smaller), can be hired or purchased from medical suppliers and pharmacies (usual cost between $40.00 - $200.00 depending on what your are getting and the mark-up.) These are widely used for treating local pain such as rheumatism in specific joints. A further development of this device is the IMPLANTED TENS. First experimented with to assist in complexities of pain suffered by some Multiple Sclerosis patients, it has had a mixed therapeutic history and is advised by specialists. On record, it is noted to be effective for some patients some of the time, but recent studies in the UK (Yeovil Hospital, Somerset) demonstrated less than a 30% favourable response beyond 4 years of use. As the device is costly, and involves surgical implant, and either hospitalisation as a day patient at least or several days in some cases, it is not widely used except when the patient is desperate and has pleaded for help as almost everything else which has been tried has failed to alleviate painful symptoms.

THE ELECTRONIC STIMULATOR is a device to distract the signals of pain on their way to the brain by confusing them (as you will recall, distraction is a good way to help children too, and you may recall the description of the 'gate' method) In my case, the operation for it's installation was performed deep in the cavernous bowels of the University of Toulouse and involved the insertion of electrodes within my spinal canal. To these was attached fine wiring which protuded from two wounds: one in my front, the other in my back. The front wound was the escape hatch for a device much the size of a television control.

The stimulator was set in motion by means of a large blue magnet supplied in the 'kit' by the manufacturer. This blue object (about the size of a mobile phone) was used as an on and off switch for the operation of my 'pain confusion machine'. There were only two settings, on and off (nowadays - 2005 - there is a more sophisticated version where one can choose rhythmic patterns moving softly or with more strength according to the severity of the pain being experienced). To make the machine work, the magnet was passed across the electronic pain relieving stimulator (remember this is embedded in my ribcage). When working, it sends out a sensation similiar to that where one would imagine hundreds of crawling ants were constantly creeping up and down my legs. This indicated that the machine was ON and that my brain was being tricked into deferring - distracting - pain messages on their way to the brain. You see there are always strange ways of distracting that brain of ours, some of which we could well do without! On one occasion I lost my magnet and was so overwhelmed with panic as the machine was OFF and I dearly needed it to be ON as I was experiencing considerable pain. A friend whose kindergarten child has obtained a large black and white cow magnet as a gift - graciously lent it to me and I was delighted that it worked. The sight of the magnet brought mirth to those witnessing my dragging it out of my handbag, so I bought myself an even funnier one, in bright pink - a copy of Miss Piggy. The trouble with Miss Piggy and indeed any other magnet was it's ability to erase the magnetic strips from my credit cards - as well as causing other havoc, in all kinds of circumstances.

The Neurological department of the hospital was undergoing renovations and at that time all surgery was performed at some distance from the old wing of the adult's mental hospital, accessed by underground tunnels, to which we were pushed on trundle beds by weary porters for a distance seeming not very short of a kilometre. In it's favour, I have to report that initially the machine's success was so marked that after having required 30mgs daily of slow release morphine plus paracetamol every four hours to gain some pain relief (yet I was never pain free) I was immediately able to reduce the morphine to nil and only required paracetamol perhaps twice a day, but this happy situation, alas, did not last. There were complications - the first device developed an infection and had to be removed, the large wound site left fallow to heal for three months during which time I returned to the previous regimen of 30mgs of morphine plus paracetamol, whilst we hoped the new implant, one re-installed in the healed tissue might offer the same favourable relief of it's predecessor (there having been nothing wrong with the machine). In due course, I had th second installation and the stimulator did alleviate the pain, but briefly, and when it failed to control pain, the symptoms were so inexplicable,that the Professor (in Southhampton) in Neurology who was the only person in the UK - then my place of residence - knew no solution other than to remove it, as he explained scratching his head, as the medical profession were uncertain as to HOW the pain stimulator actually did achieve pain relief, when it failed to work, the solution was even more curious. Gradually, over the past years the morphine sulphate has been increased to 80mgs per day which deadens much of the pain - that increase has been over 10 years - so do not believe all you hear about doubling of doses to withstand pain - although patients differ in their reponse.

My machine had afforded me blessed relief from my back pain (which the twelve previous surgical interventions had not managed to quell) for two out of the four years during which the litle devil is embedded. More recent devices (discussed and explained recently in an attempt to solve my continuing pain) are smaller, the internal segment being no larger than a fifty cent coin. The on and off control is more precise than my Miss Piggy and is set as desired by a device approximately the size of a tiny mobile phone, carried discreetly in a little belt or phone pouch - a much more professional arrangement altogether than the first prototype. Alas, it has been agreed that as my body rejected the stimulus of the first implant, neurological opinions seem to agree that implanting yet another, would be likely to fail also. Everything is not suitable for everyone. That's life!

During my stay in France, my experience with a magnet caused much embarrassment, particularly with cutlery. We were dining one evening at an elegant establishment in Paris, but when I rose to leave the table, my commodious black leather handbag in which Miss Piggy was tactfully hidden, managed to attach itself to a sterling silver fork. A bewildered Maitre d'Hotel summoned his Security Guard and it was with considerable difficulty that I explained how I apparently had to come to' lift one of the valuable silver pieces from thee table. Eventually, blushing and upset with emarrassment, following the explanation, much friendly hand-shaking in the 'finale' reassured me that I was to escape without a police escort. The only article I destroyed was an audio cassette which had carelessly been thrown upon the bed upon which I later cast my handbag. Naturally, the cassette was the story of a thriller, none other than the focal point of an Agatha Christie novel, and we shall never know WHODUNIT as the tape subsequently squeaked out the sounds of ominous silence and I never deciphered the identity of the villain.

A PUBLIC HOSPITAL EXPERIENCE by Maureen McLean

I was unlucky enough to be rushed into the Emergency Department of one of Sydney's major hospitals a couple of weeks ago with a blocked bowel. I can not complain about the nursing staff, they work so hard and can not do enough for you and they do have some awkward patient's to deal with, it was the knowledge of the doctor's and staff that I complain about, and it scares me.

After my husband answering the required questions for me as I was dryheaving, they took me straight in and the doctor was fairly quick in coming to my side, he asked me what I had had wrong me with me and I told him I had a condition called Arachnoiditis, he replied "What is that?" I tried to explain to him as I was in so much pain, he didn't understand so just waved his hand and said "We won't worry about that" and they proceeded to put a tube up my nose and down my throat to start cleaning the bowel as many people do not realize that your bowel can burst. I was taken to the ex-ray department, I had already told them I had a spinal stimulator inserted on my left side and a morphine pump inserted on my right side to help cope with the pain of the Arachnoiditis. I was dressed only in the white hospital nightie. The Radiographer got me on the ex-ray bed and took a couple of pictures and came out with a mystified look on his face and asked me "What have you got in your pockets?" I looked at him in amazement, surely he could see on the film what they were and explained what I had inserted in my stomach, he went back into the room looking very embarassed and after reading the letter to Peter Groves from the Australian Institute of Radiographers and the comment that they can not train the Radiographers on everything, I can say that I really lieve that but how dangerous is that? when you are in the hands of the medical profession and they do not know what they are doing and will not admit they do not know. I was taken back to emergency and told my husband and the doctor overheard and thought it was a great joke but he was no better as he was not interested in listening to what my disease was or learning about it. I was then told that it was worse than they thought and I would be admitted to the hospital as adhesions were blocking the small bowel. I had had the large one removed several years ago.

I was taken to the ward where I was given a drip and the tube left in for several days to clear the bowel. The nurses only know what the doctors write on their notes and they have to follow those orders, the first 24 hours I just slept, the second morning I was told I was getting a sponge down and the bed changed. I have a condition with the Arachnoiditis called Alloydnia where the nerve ends are growing under the skin and any sudden movement to the body brings on pain. In came this very large scary looking nurse who thumped hell out of me scrubbing my back, legs etc., she was from the old school, no nonsense but underneath had a heart of gold which she tried very hard to hide. If I had complained and explained I had Arachnoiditis and you had to be gentle she would not have understood (through no fault of hers) as staff are not conversant with Arachnoiditis let alone Alloydnia. The second time the doctor looking after me came around and explained about the adhesions and I said would it have anything to do with the Arachnoiditis, still not letting on he knew nothing about it, he said "What do you expect after 5 back operations?" and said they may operate and clear them and I thought "NO WAY" as I know that in a couple of months the adhesions would be back. The next day a lady doctor came around who seemed to have a bit more knowledge and said they would not be operating as there were too many adhesions and they wouldn't know which ones to clear and they would grow back. It was a foregone conclusion, I wasn't having it done anyway. So lucky me! I got the tube out of my bowel that afternoon and on fluids and then even luckier the next day HOSPITAL FOOD! A dietitian was sent to see me and explained about all the foods I could not eat, nuts! mangoes! (life is not worth living now) corn, anything that may stick in the pockets of the bowel. The dietitian was the only person in that hospital that was interested in asking what my condition was, what caused it and what was ahead in the future and asked for the website so she could read up on it.

This disease has been around for years, oil based was stopped in 1987-1988 and then water based took it's place so why is it you can be admitted to a major public hospital and not one person employed in that hospital knows what you have. In that same hospital 18 months ago I spent 10 days in Quarantine with Meningitis, a side effect of Arachnoiditis and there was 1 nurse who knew what I had and she had worked in a Neuro ward. I am not the only sufferer of this chronic disease in Australia, we have an Association of Arachnoiditis sufferers in Queensland and in New South Wales and if you put Arachnoiditis into Google you could keep yourself busy reading about the subject for weeks, so what is going on? Why are we being put in the too hard basket?

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