Five years ago, today (St. Patrick's Day), I was diagnosed with
syringomyelia. Some days it feels like it was just yesterday, others feel like
it’s been decades. It’s a struggle everyday, but I am still here and I am still
pushing to find a cure (or at least an effective treatment).
Over the last five years I have tried countless
prescription medications, herbal remedies, and other treatments for the
syringomyelia and it’s effects on my body. I have not, yet, been successful in finding a
full proof method of ridding myself of the pain, numbness, weakness, and other
symptoms syringomyelia has created for me in my life. With the help of
essential oils the headaches have lessened, but not disappeared. I also have
burning pain in my face several times per week. I’ve started losing feeling in
my left arm, which is a relatively new occurrence.
I have also worked very hard to raise awareness and
fundraise to support the research dedicated to neurological conditions such as
the syringomyelia and chiari (type 0) I live with. I am going on my third year
as a chairperson for a unite@night walk with the Chiari & Syringomyelia
Foundation (CSF). Each year gets a little better and we raise awareness for
people who have never heard of these conditions before. My walk this year will be on May 14, 2016. You can find more information about it here: http://unitenight.kintera.org/luling
The struggle comes when I am reminded how the
damage is irreversible and my conditions are inoperable. Doctors indicated I am
not a candidate for a shunt for my syrinx (cyst inside my spinal cord) without
causing even more damage (and leaving me paralyzed at minimum). I am also not a
candidate for the decompression surgery for chiari because, although it causes
horrible headaches and other symptoms, my flow is not bad enough for the
decompression to do much good. Due to the lack of change in my syrinx, doctors
have told me they no longer need to see me unless things change significantly.
They uttered the words everyone with a chronic illness dreads, “there’s
nothing more I can do to help you.” That’s a hard pill to swallow.
Each year brings both great joy and great sorrow. I
am so thankful my syrinx has not changed significantly in the past five years
(it has only changed from c5-t5 to c4-t5 - one vertebrae). Unfortunately, the damage from the
syrinx is done and cannot be reversed. So with every passing year I look back
and am so thankful it has not gotten larger, but I have to remember size
actually doesn’t matter when it comes to syrinx. It’s something I have to
remind family members, medical professionals, and peers. I’ve known people with
a 2mm syrinx who are completely unable to function and people with a syrinx the
entire length of their spine with no presenting symptoms. Size truly doesn’t
matter.
Those of us with syringomyelia are all unique. Not
one of us has the same exact set of symptoms, but we all have one thing in
common - we fight for a cure, we fight for our lives. I continue to strive to provide advocacy and
awareness for these conditions and will continue to do so until the day I am no
longer on this earth. I hope you will join me on my journey for a cure.
Stay strong, live life, be bold, FIGHT BACK!
-Misti
