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Topic: Syringomyelia/Chiari (Read 539 times) |
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KathiK
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Hi all!
I am a LONG time CH sufferer, and WAS an active message board contributor. I want to alert you to something I just experienced.
I was hurt at work in November. Severe back pain that turned into a numb right leg. Went to the company rent-a-doctor who finally ordered MRI's after I bitched my head off. Lumbar MRI (lower back) came back with a small herniated disc and a SYRINX. What the f""k is a syrinx you ask?? I will tell you...it's a cyst of spinal fluid that builds around the spinal cord and basically suffocates it.
Second MRI on Thoracic spine (upper back) showed this syrinx to be quite large and tethered around my spine. This indicates a condition called SYRINGOMYELIA. This disorder has 2 formations, one of which is called CHIARI SYNDROME. Basically, the tonsils are stuck in your neck and cause a syrinx to form in your spine. The other syrinx can be from traumatic back injury, spinal tumors, and who-the-hell-knows.
My point in all this is...people with these syrinxs, particularly CHIARI, get headaches that mimic traditional clusters. Syrinxs can be in you at birth or later and present no symptoms for many years. I have one more test to take to see if I have regular or Chiari malformation.
PLEASE,PLEASE take note...this is a VERY rare condition but becoming much more detectable now that MRI's are prevalent. If any of you ever had hydroencephalus as children (water on the brain) or traumatic injury to your back or neck, this may be an avenue you want to explore. Keep in mind that these things can take years to develop, so old MRI's may not have detected it.
I could go on and on but if you have concerns, check out www.ASAP4sm.org. The symptoms they discuss were eerily the same as mine...blasting head pain that wouldn't abate. The treatment available for this condition isn't foolproof, but a small part of me feels better knowing that I have a reason for all this pain. And please, I'm NOT saying that people without this condition DON'T have a reason for this pain...but an explanation never hurts.
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