Syringomyelia
With syringomyelia, every movement is challenging - Aurora Erickson
image by: Bobby Jones Chiari & Syringomyelia Foundation - Bobby Jones CSF
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Small Syrinx, Big Pain, and Faulty Reasoning
We are in the dark ages of treatment for syringomyelia. There is a lack of education for physicians on what syringomyelia does to a person. The knowledge that is out there is flawed. The biggest problem with it is that physicians (especially neurologists, it seems) focus on the following faulty logic:
There exists patients who have a large syrinx and no symptoms. Therefore a small syrinx does not cause symptoms. This is simply incorrect deductive reasoning. It is like saying "there exists a woman who wears no shoes, therefore, all women don't wear shoes".
This pervasive knowledge that a small syrinx cannot cause symptoms is patently absurd. Take my example. I had dermatomal…
Resources
Better Days
It's so amazing and intricate, the way SM works on the body. You never know from minute to minute, how you're going to feel. I am continually at a lose of the "no rhyme or reason" philosophy on how SM works.
Difficult Years
It maybe difficult to write but I believe that I owe it to others who are suffering or loved ones of sufferers to share the details of my condition in order for them to understand more about the disease. We can't all suffer quietly. We need to tell the world we are here and let them know what we're going through. I'm tired of suffering this invisible disease where only I/or maybe God knows what's going on with me.
My Medical Condition
Chiari Malformation is a condition in which important parts of the back, bottom part of the brain extends downwards through the bottom of the skull where the brain joins the spinal cord. The brain structures that extend downwards in Chiari Malformation are the cerebellar tonsils, the pons, and the medulla oblongata.
Rare But Insidious Disease
As I write this article, please do not feel bad for me after reading it. I want to state facts, it’s not to complain. And please don’t think that it’s so negative. It may sound negative but we should be able to decipher facts from negativism.
Syringomyelia Fact Sheet
Syringomyelia is a disorder in which a fluid-filled cyst (called a syrinx) forms within the spinal cord. This syrinx can get bigger and elongate over time, damaging the spinal cord and compressing and injuring the nerve fibers that carry information to the brain and from the brain to the rest of the body.
Small Syrinx, Big Pain, and Faulty Reasoning
We are in the dark ages of treatment for syringomyelia. There is a lack of education for physicians on what syringomyelia does to a person. The knowledge that is out there is flawed. The biggest problem with it is that physicians (especially neurologists, it seems) focus on the following faulty logic: There exists patients who have a large syrinx and no symptoms. Therefore a small syrinx does not cause symptoms.
American Syringomyelia & Chiari Alliance Project
To improve the lives of persons affected by syringomyelia, Chiari malformation and related disorders while we find the cure.
Bobby Jones CSF
To advance knowledge through research and to educate the medical, allied sciences and lay community about Chiari malformation, syringomyelia and related disorders
Chiari Fund
Chiari Fund is a nonprofit organization that is dedicated to helping those in need who have Chiari and/or Related Disorders.
Effects of Syringomyelia (In A Person's Life)
I would like to share with you my experiences with having Syringomyelia, one of the most misunderstood diseases. I would like to share with you my experiences with having Syringomyelia, one of the most misunderstood diseases.
My life with Syringomyelia aka: SM
I love to talk. I never thought I would survive not working or socializing. I had to make adjustments in my life but it can be done. I love nature, I can sit for hours and enjoy the surroundings outside. I love music and a good comedy. I enjoy spending time with my family, they are my lifeline. I try to visit the ASAP message board daily for support in dealing with illness and depression. I'm a strong person who can survive illness and depression with my family and GOD in my life.
Spinal Cords Gone Wild
My experiences with mysterious, painful, Syringomyelia (SM), as well as resources for others with SM, Chiari, (Occult) Tethered Cord Syndrome, and related disorders.
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