Spinal cord syrinx

[Tifwith5]

I am a 40 year old female and I recently went to my Doctor in an attempt to diagnose headaches, shooting pain down my right arm into my hand, numbness and tingling in my hands, fingers and toes, blue fingertips when cold, my right hand being extremely colder than my left, sweating on my right side, leg spasms, etc.   At the time I figured that I was a mess of unrelated bizzare symptoms.   She sent me for an MRI.   Straight from the report -
"the examination demonstrates a T2 hyperintense and nonenhancing cord syrinx which is indistinct within the central cord at the c2-c3 level extending inferiorly. At the level of the c3-c4 inner vertebral disc it measures approximately 3mm within the central cord and as it extends more inferiorly, it measures up to 7mm diameter, occupying at least 60 to 65% of the cord diameter. It is most apparent in c6 and c7.
It continues to be visualized throughout the upper thoracic cord skin to the t6 level."
I was told I have a spinal cord syrinx.  She referred me to a neurologist, he put me on medication for the leg spasms, and gave me something for the headaches, but didn't seem too concerned.   Isn't this a rather large syrinx? I've tried to find another neurologist, but I've gotten a lot of "we don't deal with that kind of thing".
I now have more questions than answers.   What do I do with this?   Where do I go from here?

[ethalndoz]

Hi,
I too was diagnosed with a c2/c3 syrinx back in 2009.
My symptoms were/are,,, tingling in the arms and restless legs, severe headaches behind my eyes and back of my head, blurry vision.
After many Mri's the only thing the neurologist could suggest is to keep an eye on it with regular Mri's to see if there are any changes.
I was told that there was no possible way to operate or even try and get a sample because of the high risk it could do more harm then good.
they have too said it is not a Chari malformation.

[Tifwith5]

MRI was on neck and brain, no chari according to the MRI report.   Like I said, as of now, we have more questions than answers.   I haven't been told much of anything other than I don't have fibromyalgia, carpal tunnel or ms after the neurologist did a nerve conduction study.      
How do you find someone who deals with it?   The ones on your list are out of network on my insurance, and for right now with the rising medical bills, my husband wants to stay in network.
Finding care has been the most frustrating!
Thanks for your reply.

[selmaS]

  Hi...there r a few things I would ask...one, did u have a injury or trauma to the area where the syrinx is located? Did they say it was congenital or acquired?

  U want to know what is obstructing the CSF flow that a syrinx formed.

Also, did u have a brain MRI? I wonder if u have chiari as well?

  U want a NS that deals with syringomyelia (syrinx) , we do have a list of Drs in the Chiari forum that u may want to research to see if they can offer u help.

http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc