Living with Cauda Equina Syndrome
Two years ago I had surgery for Cauda Equina Syndrome. After being under an orthopedic’s care, and several visits to the ER of two different
hospitals, I was finally being brought in by ambulance because I woke up and couldn’t feel anything from the waist down. I finally got an answer after a year of excruciating pain. I have Cauda Equina
Syndrome. Finally an answer as to why I can’t extend my legs, and what the cause of the pain was. Finally, a “real” answer, instead of always saying sciatica. I was told I’d need surgery, or I would never walk again. I had surgery on February 26th, 2016.
I had been hurt for nearly one year before that day. I tripped over our dog. It’s not like I had a particularly long fall to hit the ground. In fact, I know exactly how I landed. The left side of my body hit the wall, and so did my yogurt that I had gotten up to get. Zeus, our Great Dane/German Shepherd mix, was lying in the hallway. He wasn’t there on my way to the kitchen, so I fell over him on my way back. Zeus was a rather large dog, and when I landed on the floor I was on my knees, with my body over the length of the dog, and then my elbows were on the floor in front of him. In fact, I was concerned about hurting him. The hospital did some x-ray’s because I was really hurting from my hip, to my knee, to my ankle. They sent me home telling me to take it easy, and ice my ankle.
I was so sick of going to Dr.’s and constantly being told I had sciatica. Even as my symptoms progressively got worse, it was still sciatica. I hate that word!!!
The week before the ambulance was called I could not walk. Both feet had turned inwards, and were not working right. (Another Dr. had seen this.) I had pillows propped up a certain way on the bed, because I could only lay on my right side. My legs were bent, because I could not straighten them. The pain was ridiculous, and I just cried because nobody believed there was anything wrong. It felt like I was being treated like a drug addict seeking pain pills. I was so relieved when they said I needed surgery at the hospital. Finally someone had an answer.
Once I got to the ER, the Dr. ordered an MRI, and surprise!! I had been admitted, and the Dr. told me that I had a very large herniation between L2-L5. He said I needed surgery to decompress my spine, and that I would be very comfortable until the surgery. They did not do an emergency surgery on me. Apparently, I had gone on too long already, in their eye’s. I was numb from the waist down, and had lost control of my bladder a few times. I waited three days, doped to the gills, and getting worse before they rolled me into the operating room.
I was discharged the next day.
I was bed bound for nearly six months, graduated to a wheelchair (for another six months), then started to use a walker for six months, and can now walk with the aid of an AFO brace. It was the worst surgery I have ever endured. My legs were so weak, and very, very swollen. They were like jello. My right foot worked in the beginning, and it was my left foot that wasn’t working. Somewhere along the way, all of the strength came back to my left foot. My right foot now has foot drop, and I can’t really move my toes. For me, it is like my foot is locked in a really bad cramp. Both feet are extremely numb. My feet weren’t numb before the surgery. From my knees down, on both legs, I have very strange sensations. I don’t always feel hot and cold. Walking is limited. Then there’s the matter of the pins and needles. Ironically, when I was a child, I used to like making my hands and feet fall asleep so I could feel the pins and needles. Looks like I was preparing for this moment…
I can feel the needles when I press down on my skin around my stomach. They’re always behind my right thigh, and come and go in my saddle area.
It has been two years since my surgery, and although it has been a very lengthy recovery, I am no longer in severe pain. The surgeon did his job.
I have become a bit of an expert on describing pain… “Bubbles going up and down my spine.”, “Feels like I’m sitting on an inner tube.”, “Feet are on fire!”, “Feels like bugs crawling.”, and “electrical jolts from my rectum to my feet.” Just to show a few….
I can extend my legs now and can finally sit down without writhing in pain. I have control of my bowel and bladder movements. I did have to manually empty my bowels before and after the surgery. I regained control at about six months after the surgery. I have never had to self cath. I need to use an AFO brace on my right foot, but with it I can walk, again. I also use a walker, and a cane depending on the circumstances. I hate wearing socks or having blankets touch my feet. I get tired easily, especially if I do something the day before….like grocery shopping. I no longer make plans. Every morning that I open my eyes is literally a new day. I never know what or how I am going to feel. Am I going to have energy? Is my back going to start thumping?
Every day is different and I will never be 100%, but for the most part, I am healed.
What angers me the most about all of this, is that I am on my own. I am handling my own recovery. The Dr. that did the surgery no longer has a need to see me, because he did his job. According to him, the “Cauda Equina surgery took.” I am left with the aftereffects. He does not care about that. It is a horrible feeling to be so alone with no answers. The Dr. that I most respected was the one that admitted he “has heard of CES, but does not know what to do for me.” I appreciated the honesty. He was always there for me. Then my insurance no longer covered him, and I had to find a new primary. The new primary Dr. doesn’t know a thing about it, other than it is “some kind of bad lumbar.”
I have only seen her once, and that was nearly a year ago. What is the point?
I have learned to be very in tune with my body. If I have an urge to void, I cannot wait. I exercise every day. I feel like my muscles need that. I ride an exercise bike and do all sorts of stretches that I can find on the internet. My legs seem to feel better afterwards. When it is warm out, I swim. To me, that is the best exercise out there. When I’m in the pool, I feel normal, again.
Thank goodness for groups like The Cauda Equina Foundation, and other’s that are out there on the internet. It’s nice to be able to speak with other’s that have the same affliction as you. This is where I can find out if something is going wrong with me. Obviously, I would seek medical attention if something were really out of sorts, but for the most part, I have quit going to any Dr.’s. Sadly, they are a waste of my time.