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My name is Rick Labuda. Shortly after the
birth of my first child, I was diagnosed with Chiari and syringomyelia.
In retrospect, I had been ignoring symptoms for years - headaches were sinus
problems, constant neck pain was from years of athletics, other symptoms
were similarly written off. I finally asked a doctor about my neck
pain and an X-ray was ordered. The X-ray found that my top two
vertebrae were fused together, so they recommended an MRI. Of course
the MRI showed a significant malformation and two syrinxes.
Like most people, I was thrown into a storm of
confusion. Since my diagnosis, I've done a lot of
research and came to realize that I was extremely lucky. At the time
(1998), and still today, the information available was
useful for a gaining a general understanding of the conditions, but failed to highlight the most recent
thinking on critical topics and address key issues facing patients. I
had a thousand questions, and only some answers were available. Later,
I realized I didn't even know what half the questions were. By almost
pure luck, I found an excellent practicing neurosurgeon for the surgery and
started the long road to recovery. I think I fared better than many,
but not as well as some; these conditions affect everyone differently.
There are many, many open questions, and there is
a wide range of opinions in the medical community regarding every aspect of
treatment. At the same time, research is progressing all over the
world and advancing our understanding of these conditions. I started
Chiari & Syringomyelia News to provide the latest information to the
people who can use it. In addition, I hope to bring together the
people affected, by letting them see and hear about how other people have
been touched, how they cope, and how they live well.
In addition to my direct experience, my qualifications
include:
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Former member of American Syringomyelia Alliance
Project (ASAP) research committee. As such, I was involved in
establishing the procedures for awarding grants and was active in reviewing research
proposals.
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Direct sponsorship of research into the
mathematical characterization of the Cerebrospinal Fluid (CSF) system in
an attempt to understand the causes of syrinx formation and how a Chiari
malformation affects CSF flow.
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BS in Electrical Engineering from Carnegie
Mellon University.
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Over 15 years of engineering, marketing, and
management experience for high-tech companies.
I hope you find the information in this newsletter
useful and interesting.
Thank you. |