My Journey with
"Syringomyelia: a.k.a. "SM"
I know just what you're saying..."Syringo...WHAT?!"
That's exactly what I said when the doctor gave me
this diagnosis. So I have read and researched and
researched some more to educate myself as much as
possible about this new disease I am faced with.
So many of my gracious and caring friends
have asked a lot of questions about this disease
and so I have decided to share with you
what I have learned and also keep my
own SM Journal
First allow me to share with you the "FACTS"
About Syringomyelia
Syringomyelia, often referred to as SM, is a chronic disorder involving the spinal cord.
 For reasons that are only now being understood, cerebrospinal fluid enters the
                              spinal cord, forming a cavity known as a syrinx. (Doctors sometimes use other
                              words such as cyst, hydromyelia or syringohydromyelia) This syrinx often
                              expands and elongates over time, destroying the center of the spinal cord. As
                              the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can
                              occur, depending upon the size  and location of the syrinx. 
 There are two major types of SM. In most cases it is related to a congenital
malformation involving the hindbrain (cerebellum) called a Chiari I Malformation,
named after the physician who first described it. This malformation occurs during fetal
development and is characterized by downward displacement of the lower part of the
brain (cerebellar tonsils) beneath the foramen magnum, into the cervical spinal canal.
This displacement blocks the normal flow of cerebrospinal fluid. When normal flow is
obstructed, a syrinx can then form in the spinal cord. Not all patients with Chiari
Malformations will develop a syrinx, however. 
The second major type of SM occurs as a complication of trauma, meningitis, tumor,
or arachnoiditis. In these cases the syrinx forms in the section of the spinal cord
damaged by these conditions. As more people are surviving spinal cord injuries, more
cases of post-traumatic SM are being diagnosed as the syrinx can form years after the
What are the symptoms?
   The symptoms of SM are numerous and a person may have various combinations of
different symptoms. Symptoms tend to develop slowly, although sudden onset may
occur with coughing and straining. Some common symptoms include: loss of
sensitivity, especially to hot and cold, muscle weakness and spasticity, motor
impairment, loss of bowel and bladder control, as well as osteoporosis and scoliosis.
The majority of patients suffer from headaches and chronic pain. Syringomyelia may
eventually result in severe, disabling handicaps such as paraplegia and quadriplegia. 
How is Syringomyelia diagnosed?
   In the past diagnosis was difficult. Many doctors were unfamiliar with SM so patients
went from one doctor to another while their condition degenerated. Now, with the use
of Magnetic Resonance Imaging technology, the timeliness of diagnosis can be vastly
improved. The images taken show body structures such as the brain and spinal cord in
vivid detail. This test will show the syrinx clearly and any other spinal conditions or
abnormalities. MRI is safe and painless. 
This information from American Syringomyelia Alliance Project Inc.
Are you still with me?

The Beginning of my Journey
June 3, 1999
As most of you know I was born with
Spina Bifida, which is also a spinal chord disorder.
In April '98, my health began to very quickly deteriorate.
Doctors had no answers, even after numerous tests.
Until July, when my pain specialist ordered a
full spinal MRI. It was about a week later when he
called me and that was the first time I heard
that strange word..."Syringomyelia".
So I quickly began to search the internet and any
medical dictionary's that I could find.
To me, the unknown is much more frightening
than reality. So I wanted to know what to expect.
Some of the obvious changes in my body were
my increasing problem with
balance was getting worse and worse.
My arms became weak and painful and I
was always dropping things.
I began to notice electrical shocks
shooting throughout my body.
I had the tethered chord repair operation
in January, but unfortunately an infection
set up in the wound and I was returned to the
operating room. I spent 109 days in the
hospital during which time my SM symptoms
seemed to have doubled!
I can no longer walk more than 6 steps with
the help of a walker, my arms are getting weaker
everyday, I have lost all bladder control,
and my swallowing is beginning to be affected.
The doctor's do not promise a bright future
for me. But my future does not lie in the
hands of the doctors. My life and my
future lie in the hands of my Heavenly Father.
I may not walk again but I can still be
a powerful voice for Jesus while I am
on this earth.
"You will go out in joy and be led forth in peace;
the mountains and hills will burst into song before
you, and all the trees of the field will clap their hands."
Isaiah 55:12
"He gives strength to the weary and increases
the power of the weak"    Isaiah 40:29


I did not create this page to bring attention to myself.
But rather, to bring attention to the disease.
Little is know about this disease and much research needs
to be done. I am involved in various fundraising projects with
the hopes to add to the funds. YOU can help!
One very easy way that won't cost you anything more than a
stamp or to clip the used postage stamps from your
mail everyday rather than throw them away. Drop them
into a ziploc bag and when it's full, EMAIL ME for my
address to mail them to.
These used postage stamps help raise hundreds every year!
Send your tax deductible donation to:
American Syringomyelia Alliance Project Inc.
                        P.O. Box 1586
                  Longview, Texas 75606-1586
Thanks for visiting this webpage and for taking the time
to read the information about my disease.
Let me know you've been here!
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©Denice Whitaker, 1999
This space courtesy of GeoCities

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