Syringomyelia

I was wondering if anyone has a thought on this. I have a syrinz that runs down more than 3/4 of my spine. Other than headaches ( probably from the chiari) The only symptoms I suffer is bad pain in my left side neck, shoulder, & arm, & severe nerve pain & skin sensitivity, same side. Because so far each NS has given me a different answer,I wonder If I am a ticking time bomb. Am I going to wake up one day soon with horrible, permanent symptoms? How big can a syringz get? What can happen if it gets so big it has nowhere else to go? All I have gotten from the NS's is that its an ugly picture, & wow, people with that usually are much worse than you!! I have had 1 NS tell me I am under no time pressure for surgery, & 1 tell me I should get it done in a month or so. I would appreciate any & all thoughts on this, thanx guys!!!

I have “extensive syrinx” according to MRI. It goes from the cervical spine down to T7. Both neurosurgeons I consulted with indicated that is was associated with an increased risk for paralysis. They both told me that once the symptoms start progressing, they don’t know how quickly. The overall width of the syrinx is 7 mm in one direction and 10 mm in the other. Creates a nice big hole in the middle of the spinal cord. I was told I am getting to the point that my body can no longer compensate. The MDs were surprised that I was not having severe pain or other issues. I have changes with tingling and hypersensitivity in my left arm. The symptoms were initially noted with sneezing.

Mine goes past my t9.c9?lol,nobody explains things to me, hence this question. Nobody took the time to explain the risks with this. I have left arm issues as well. How long ago were you diagnosed? Have you decided to get surgery?

I had a posterior fossa decompression approx 8 weeks ago. I am doing well. I only take flexoril at night and ibuprofen. I am waiting to have a follow up MRI in July. The goal of surgery was to stabilize or decrease the syrinx. If you look at the MRI report, it might say specifically the width. I do know that there are significant risks with not addressing the syrinx. The first few weeks I did not have any symptoms with sneezing; I think it was masked by the meds. I spoke with my MD office today about the follow up MRI. They had ordered the test for the brain. I took the opportunity to explain that the length of my syrinx could not be determined without a thoracic scan as well.