On this day in 2001, I was showing symptoms of Cauda Equina Syndrome and didn’t know it. I just knew I was in a lot of pain and couldn’t walk or feel my toes. As time progressed this would happen to my right foot and then I knew I was in trouble. I called my psychiatrist a couple days later because I had an appointment to see her. I told her what was going on and she said to call an ambulance right now. I never heard her be so stern before. And couldn’t figure out why she was freaking out. I was in another world of pain and misery that I really didn’t care. But I know that I needed help and I got it later that night. I was in the ER for hours before they finally figured out I have this “Cauda Equina’ syndrome, what ever that was. No one bothered to explain it to me. I was left on my own in figuring it out but I know that I couldn’t walk. I was twenty-five years old and I was in a wheelchair. The residents were telling me I had to have emergency surgery. I felt like I was in a daze, that this wasn’t happening to me. So I asked if this surgeon was a board certified surgeon. She wasn’t but she was “eligible” whatever that meant. I said no, I wanted a board certified surgeon or there was not going to be any surgery. So at five in the morning I got my surgeon and he said I was going to the OR in an hour or so. I bawled. I didn’t know what to do after this. I still kept thinking all I needed was physical therapy and pain meds and maybe a walking device and I would be ok. No, I had to have surgery to preserve what I was losing. Luckily my bladder wasn’t too much effected by all this and I had a good surgeon whose only mistake was putting me on the wrong antibiotic, which later caused a staph infection two weeks later. I still feel like if I was place on the right antibiotic, I wouldn’t have needed a second surgery to clean out the gunk in my surgical bed. I am just grateful they got it in time or I would have been in worse shape.
This happened over thirteen years ago and I still remember it like it was yesterday. I guess you never really forget something like this happening to you. The most humiliating thing was that I couldn’t go to the bathroom on my own. It took several nurses to hold me up and another to wipe me off. You don’t forget something like that easily. You also don’t forget relearning how to walk again, this time with something called AFOs because your feet are still doing flip flops by themselves. You have no control over your feet. You have no idea where they are. Your balance if off and this is a terrifying time. Because it’s been more than three days and you still can’t feel your toes. Doctor said it would be three days and I would be up and walking. What a lie. He didn’t know the damage I suffered. He didn’t care that I was going to be in rehab for quite a while. His job was done. He did the surgery and that was what he was supposed to do. The rest was my job, though no one told me what it was. I had to figure it out all on my own. And I did figure it out months later when I was walking with a cane and visiting a support group for those suffering my condition. Some had it worse than I did. Some had it the same but had bowel and bladder problems. I guess I was one of the lucky ones that just had the foot drop and weird walking moves. I learned everything I could about the nerves and dermatomes. That helped me to understand where my pain was coming from.
Today I still have the AFO. It might not be the same one I had thirteen years ago but it works. It helps me walk without pain. And that is all that I care about at this point in the game.
midnightdemons7 