Hello @robinsitzmann and welcome to Mayo Clinic Connect.

How long have you been diagnosed with myelomalacia?

When will I die?

Yes! I had c 4-7 fused in 2016 or 17, myelomacia with a spontaneous spinal cord bleed , the repair was anterior. Last April my c 2-5 went and was fused dorsally . I have much permanent damage, numbness and sensation problems, gait issues and severe pain, random spasms in my left hand and arm and thighs and lower legs.. but my whole back is a mess of spasms, tight muscles , pain.
I see a pain management doctor now , actually I only started seeing the doctor after I proved the myelomalacia and had the second fusion( I bought a house after my scare of death 1500 miles away from my home state , where the cold isn't part of what is causing me extra pain)
For a yr that I was deteriorating before the second fusion, I begged for them to help me control the pain. The np I was seeing didn't know what it was and told me that myelomalacia wasn't pertinent to my pain management. It was horrific and now it's just terrible. I don't know what to do but my life is no kind of life .

Yes. Was in Er for muscle spasms ans I have myeomalacia at c5 and stenosis. I wondering if there's a surgeon at mayoclinic who knows what to do. I was already fused c3 to c7 but still have a mild stenosis at 7 more so at 5 and c7 t1 show protrusion. My spurs are still there after a surgery just in Aug. 2022. I've never seen an updated Mri reading almost the same in 2024 for a fusion I just had. I'm crooked now scoliosis. Vertigo and nueropathy. I feel your pain. It seems nobody in my city wants to touch me. That's why I need to find some surgeon who knows hiw to fix me.