Myelomalacia

I was diagnosed with a spinal cord tumor at the level of C6 to T1. I had it surgically resected 6 years ago. It was intramedullary and it was diagnosed as an hemangioblastoma.  I walked away from the surgery, however, I did have some neurological deficits. I lost  some motor function  and have some atrophy to my right hand  due to ulnar damage at the surgical site. I also had decreased sensation to the right side of my body and both lower legs and feet.  In the past few months, I have been experiencing increased headaches, tension and discomfort  in my neck. My right leg now stays numb day or night with symptoms of legs "spasms" and tightness worse at night. I am losing flexibility in both legs, worse on the right. Recent MRI again shows the myelomacic changes due to the surgery. I understand what myelomalacia is, but I am wondering if the damaged tissue can spread. I did have a 5mm residual area at surgical site that we had been watching, not sure if it was residual tumor or scar tissue that had been stable for 5 years, but on this years scan is no longer there. My neurosurgeon is no longer in practice and I had to see a new one this year. He could not answer my questions..he said he could not help me.I feel lost as to what to expect not fully understanding what happens with damaged spinal cord tissue. All I know is that my legs seem to be getting worse and no one has an answer. Can you enlighten me? My family wants me to go to Mayo clinic.  I have been working since my surgery and want to continue to do so...but I feel I am slowly heading towards paralysis and fear no one will listen until it is too late.