What does that mean?

Regina - September 10, 2000 - by: Carey Heilman

horrible medical condition

This is how a lot of my conversations go when I tell anyone about the horrible medical condition/disease/spinal injury that I live with.




In fact this health problem is so severe that most of the people that have this disease find themselves regularly attending emergency wards, and doctors offices. Most of the health professionals have never heard of the disease and those that have brush it off as a mere inflammation of the arachnoid lining of the spinal cord.....hence the name "Arachnoiditis"!




But really this disease is much, much more than that.



12 million

There has been large awards in the USA to individuals who have acquired this disease. It is thought that there may be 12 million people in the USA that have this disease and do not know it.



neurotic, hypochondriacs

The worst thing about this disease is that it is so hard to get a diagnosis...why? The disease is most commonly caused by the medical profession. Individuals go to doctors complaining about a wide range of symptoms and told they need anti-depressants, they are neurotic, hypochondriacs and have been subjected to more and more medical tests only to find there is nothing to be found.



psychiatric medications

The individual is usually suffering with severe pain that is written off as hysteria, and having problems already mentioned. This causes the person to begin to think that maybe the doctors are right, maybe I have some sort of mental problem? Often these people go on all kinds of psychiatric medications, yet the symptoms do not go away.




As you can tell this is a horrific place to be, especially year after year.




In my case I got lucky and got a doctor who knew a little bit about the disease and asked the right questions.




Hoooray I am no longer a psychiatric patient, I am a neurological patient!!!




So, I ask the doc...."Doc what can be done about the arachna...what?"




Doc gives me the bad news, "Nothing" maybe a morphine pump implant will make you more comfortable".




Always the optimist, and having lost complete faith in the medical system, I got on the internet and did all the research I could.




What did I find?




Nothing but bad news and an internet support group called "COFWA" or "Circle of Friends With Arachnoiditis".




It was because of this group that I was able to find meaningful information on the disease.



pain of cancer

The disease is characterized as "the pain of cancer without the release of death"!




There are many people out there that are diagnosed with MS, RSD, Lupus and other diseases that actually have arachnoiditis.



no need

The real crime is that there is virtually no need for anyone to get this disease, yet every year the numbers of people who end up with this disease grows.




The vast majority of people that get this disease received it unnecessarily. If you had a myelogram (especially prior to 1987) an epidural (mostly given for child birth) or steroid injections in the spine.




The knowledge is out there but the vast majority of physicians are not aware of it. The milligram is almost completely unnecessary test with the advent of the MRI. Yet myelograms are still being performed. Pregnant women who are about to give birth are very seldom properly warned of the possibility of getting arachnoiditis. Those who are getting injections in the spine to ease the pain are almost never told that they risk getting arachnoiditis.
  Fortunately if you do have it there is a place you can go on the web.
  There you will find all the information you need to arm yourself if you think that you might have it and wish to discuss this with your physician. You will find information from reputable sources, and research that is being done by Doctor Sarah Smith.
  You will also find personal stories from many who have this most insidious and far to common disease.
  The web site is the most comprehensive source of arachnoiditis information in the world and has one award in the short time it has been up. I have had over 6,500 visitors since July 2000, from all over the world. The page is updated daily depending on my health.
  Please help us get the word out about this disease so that others will never get this disease and it can be eliminated from the face of the earth.
  Carey Heilman
4031 Victoria Ave
Regina, Saskatchewan
S4T 1M8
(306) 525-9404
Fax (306) 569-6071
  Go to the Award Winning