Arachnoiditis
Letter from Australian Arachnoiditis Sufferers Association
I am the President and Secretary of the Australian Arachnoiditis Sufferers
Association NSW. Inc.
I started the Arachnoiditis Association four and half years ago around my
kitchen table. There were 11 people and we formed a committee. I built a web
site www.aasansw.org.au and we registered with the Tax Department, The
Department of Fair Trading etc. We manage on donations, registration and
renewal fees and raffles at our meetings which are held mostly at the Blacktown
RSL who kindly let us have a room free for the year. We have now grown to a
group of 150. Our youngest is in their forties and our oldest is 84. We support
each other and understand what each of us is going through where in the most
part the public even medics do not know what Arachnoiditis is and the chronic
pain we suffer.
Arachnoiditis is a cruel pain and so bad that members compare to cancer pain
except that they don't die. I have one member that is in the Euthanasia group and
said that she has discussed it with her family and when she can no longer stand
the pain that is when she will do it. I try to keep them positive and they know that
I am always here to talk to them and I understand the pain they are experiencing.
Most families can be supportive but they still do not 100% understand the pain
and why it is not in one place all the time but moves around and you never know
where it is going to turn up or when. You can not plan your next day as you do
not know if you are going to be well enough to carry out your plans.
I once gave a talk to a Rotary group at Penrith and told them my story and about
some of our group and there was not a word out of them for half an hour and
when I had finished they were so shocked that they had never heard of this
incurable disease and a policeman stood up and he said 'That is what my Mother
has and we never knew what was wrong with her'.
I have written to Politicians and the Prime Minister with no reply asking that
Cortisone Injections should be stopped as I had had so many call me over the
Xmas period (all men in their forties) and they had Arachnoiditis due to these
Cortisone injections.
The majority of our Association have got it from Myodil used in Myelograms
which was banned in 1988 or water based Myelograms which are still being
used. I have a new member, a male who is 54 and was diagnosed with
Arachnoiditis with an MRI and then for some unknown reason was given a
Myelogram which has made his symptoms worse. I have another male member
who had Arachnoiditis and had a fall, also in his late forties. He ended up in the
Royal North Shore Spinal Unit for about 6 months and once again for no reason
given another Myelogram and is now paralyzed from the neck down. He couldn't
give me an answer when I said 'Why on earth did you have another Myelogram
when that was how you ended up in this mess in the first place', he couldn't
answer me, but when we are in chronic pain you will do anything to get just the
slightest relief. I do not know any other illness that can give you electric shocks
as you are dropping off to sleep at night that lifts you off the bed, only another
Arachnoiditis sufferer would believe you.
Helping these people and being there for them just to talk to and having
someone who understands keeps me going. I hold meetings and send out
newsletters after the meetings. I try to keep them informative and cheerful. We
have members in WA, SA, VIC, QLD and all over NSW. I have been asked
by sufferers in the US, Canada and England if they can join but it is too hard
and I am sick too. I had an email from a German Chap who asked if I could
give him the names of some medications some of our members take as in
Germany Arachnoiditis is not recognized and they are told it is all in their head.
Maureen McLean 'JP'
President/Secretary/Webmaster
web: www.aasansw.org.au
email: houdie@bigpond.com
Explanation of Arachnoiditis for friends and GPs - Adhesive Arachnoiditis
Arachnoiditis is a condition which begins with the inflammation of the Arachnoid
Membrane covering the spinal cord and brain, this can cause a gradual build up
of fibrotic scar tissue which tethers the nerves to the Arachnoid Membrane. This
scarring 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 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.
Known causes of this condition are the following, Tuberculosis, Meningitis, Spinal
Tumours, Abscesses, Spinal Surgery or Trauma. By far the largest single cause is
medical intervention such as Myelograms, Radiculargrams, Epidurals, (Steroids)
and Lumbar Punctures. (This definition was posted on Gateway to Neurology at
Massachusetts General Hospital).
WEBSITES:
www.burtonreport.com
www.aasansw.org.au
www.whataboutarachnoiditis.org
www.theaword.org
www.chronicpainaustralia.org
www.cofwa.org
www.reneegoossens.com