The Brain's Response to Spinal Cord Injury
Aug 5, 2019 12:51:34 GMT -8
Post by outlier on Aug 5, 2019 12:51:34 GMT -8


My injury was 19 years ago and I sure wasn't given much info then. I couldn't tell you what ASIA I am and no one has even bothered to tell me. Until I found these SCI forums last year I was living in a bubble because I had never met anyone that "lived like I do". I've learned more through the forums than I have with any doctor. This is partly my fault because I gave up on them because I always felt as if I was being given the run around. It was almost as if they thought I was imagining these things. I assure them, at no time did I imagine having a bowel accident in public. Thankfully I have limited those to few and far between.
My injury is L1-L2. I have been fortunate to walk with the assistance of AFO braces. My thighs are very muscular because they do all of the work. From the knees down I am skin stretched over the bone. I am very active and at times I am afraid I will snap a bone and put myself in a predicament. I'm not sure how common this is but it does stick in my mind.
I would love to sit down with a neurosurgeon and get some of my questions answered. Are there things out there that could ease my pains, make my quality of life better and what I should or should not be doing. The new health care laws make getting a referral the same as getting an act of Congress as I have learned in the past few weeks with pain management. However, I am going to pursue this further because I have a right to know what is going on.
I thank each of you for sharing your knowledge and experience and as I move forward I will definitely post anything and everything that I find out.
