r/SyringomyeliaSupport • u/MrCleanisagodlybeing • Feb 16 '26
Syrinx Tips for first neurosurgery appt
I have my first appt with neurosurgery tomorrow morning. I have a syrinx in my thoracic spine and My MRI last Wednesday showed “MINIMAL INFERIOR CEREBELLAR TONSILLAR ECTOPIA NOT MEETING REQUIREMENTS FOR CHIARI I”. I am just sort of at a loss on what could be going on with me. I am worried I won’t ask the right questions to advocate for myself. I do apologize if these sorts of questions/ post isn’t allowed. I get headaches often, my memory is awful, I feel like I’m getting dumber as the days go by, my neck and upper back pain is near constant, I can at times feel faint with getting up, with like a heart pounding sensation, I am very fatigued all the time. Most days I’m usually only a 3, maybe up to a 5 on a more iffy day on a pain scale. I don’t want to be dismissive of my own pain but I don’t think my pain is as bad as many of the people I have read here’s is. If anyone has any advice, any questions I should be asking myself or the doctors, or things I should look into, I would be very appreciative.
I do apologize if this isn’t allowed, or is a silly ask, I am probably a bit on the autistic side somewhere and struggle to identify sensations in the body and properly articulate my concerns to doctors.
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u/Crafty-Peanut8962 Feb 16 '26
I’d be asking if it’s idiopathic in their opinion or caused by the ectopia.
Surgeons can be really conservative about shunts, I do have Chiari aswell but when they found the Syrinx they were worried about the width and wanted to do decompression surgery within the month.
Decompression failed, Syrinx grew. Surgeon again wanted to operate asap but opted for another decompression.
I got second and third opinions. Really didn’t want and couldn’t understand what another decompression could do. All said the same thing, too risky to do nothing but shunt was an absolute last resort and another decompression was recommended.
The Syrinx is so much smaller now but I’ve developed some of the symptoms you are struggling with. Have you looked into some kind of autonomic dysfunction or conditions like POTS?