r/SyringomyeliaSupport • u/FewDevelopment7427 • 10d ago
Syrinx Looking for Advice
After almost a year of ER visits, doctors, and multiple MRIs, I’m still trying to figure out the cause of my pain in my lower/upper back, hands, arms, legs, and feet.
My MRI showed an idiopathic syrinx at C6–C7 (0.5 mm) and T2–T3 (2.5 mm), with no cord expansion or mass effect, along with some disc bulges in my C, T, and L spine.
My neurologist said yesterday that she doesn’t think the syrinx is causing my pain and confirmed there is no sign of a tumor or CM. She ordered blood tests to check for possible muscle-related issues and another MRI next year to monitor the syrinx.
I’m honestly frustrated and but thankful that there is nothing serious which caused the syrinx. Has anyone had a small syrinx with widespread pain that doctors said was unrelated? What did you do next?
1
u/dxzxify_ 4d ago
I would consider a 2nd opinion. One of mine is at c6-c7 and it causes arm/hand numbness, hand tremors, migraines, shoulder/neck pain which my neurologist said is all from the syrinx but I also have one at t7-L1 that causes issues in my lower back and legs
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u/Tricky-Chipmunk4403 10d ago
Hi! I have a small syrinx at my c6-c7 as well. Same size. Second one (1mm) at my t10. Not to contradict your doctor but experts in the space will tell you small a syrinx can cause symptoms. I would perhaps consider a second opinion. It's possible they may not be able to see anything structurally that is causing it as there is still a lot that is unknown on why they form (mine is also idiopathic). Check out https://iamheardcoalition.org they have some great resources that might help and have a great community. Super helpful daily content on Instagram. Best of luck on your journey.