Syringomyelia can be caused by multiple different things. In my case, we believe it is being caused abnormal tension on my cord. Here is my understanding of why we are treating syringomyelia--which effects much of my spinal cord--by simply snipping the filum at the bottom (pasted from recent email):
Children born with obvious spina bifida are well known in
medicine, and treated young. However, tethered cord is not
a black-or-white condition. Children with borderline
("occult") spina bifida (a.k.a. occult tethered cord) are
sometimes treated by experts like Dr. W. Adults who
have grown up with spina bifida occulta (me) may not have
serious symptoms until mid age--when more cord damage has
accumulated. Most of these adults are diagnosed with
chronic pain syndromes like fibromyalgia or if they have
syringomyelia (SM) on an MRI, "idiopathic" SM. Most slowly
deteriorate without help, because adult-onset tethered cord
is not widely understood. This is changing (see research links
on lower right of my blog).
Dr. X takes advantage of the gap between vertebra to
minimize bone removal in the lumbar spine; he/she doesn't do a
full laminectomy. She only needs about an 8mm cut of the
dura (spinal sac). She says the procedure takes her about
half an hour. She has done thousands of the procedures
with very few complications. She considers my case
straight-forward, and expects I would have relief of some pain and
numbness. She reports that %90+ of patients like me have
neurologic improvement after detethering. I told her I'm
not getting my hopes up, but I'd be happy just to stabilize
my condition.
As I said in that email, my main hope is just to stabilze my condition, so I don't keep getting worse. There is a little permanent damage to my spinal cord, so I probably won't be back to the old crazy-endurance-sports me. About six months to a year after surgery, I should have a good idea of how it worked.
2 comments:
How did your neurosurgeon find your syrinx in the first place? Where you having symptoms? what kind? I was diagnosed with a syrinx c6-c7 in 2005 when I had an MRI of the brain and neck done for migraines and neck stiffness. My NS just released me Monday after another MRI showing no increase in syrinx size and said I should live my whole life with this syrinx not causing a problem. Kinda confused. Wondering if I should not continue to be followed. He did say to call him if I develop any new symptoms but not sure what "symptoms" would mean my syrinx is growing. He also said that it must have been caused by some sort of trauma because he cannot find anything else wrong. Did your syrinx grow after the initial MRI?
Hi,
Thanks for sharing your story with SM and giving me hope. I was recently diagnoised with SM after a car accident on 1/14/09. Many of the SM symptoms--numbness/tingling in the right arm, pain to my shoulder, and a burning sensation in my neck began two to three weeks following the accident. I was shock when receiving the results, but more surprising is the doctor telling me that I may have be born with Chiari Malformation. Would you share the doctors that performed your surgery, as I am looking for a second opinion? Thank you.
Post a Comment