Cauda Equina: My Experience

So, before I get started I have to say I write this with a measure of guilt. Many people here have heart-rending stories and trust me I feel for all of you. But, compared to many stories I seem to have fewer symptoms. I went back and forth about writing my story and it took a great deal of convincing by my wife to do so. I decided to write it as an example of a more moderate case, though it is still a watershed moment in my life that has taken much from me. 

I had back problems for a while but they would always go away. Then after taking a 5 hour plane ride then hoping in my car and driving another 3 hours my back completely locked up. I started to experience constant pain. I could not walk or stand for more than a few minutes and was severely debilitated. I dealt with it for almost three years as it got progressively worse before seeing an orthopedic spine surgeon. He diagnosed me with a bulging L5 S1 disk and operated. I travel for work and was back on the road a couple of weeks later. About 9 months post op I started to experience a return of my symptoms. I went back to the spine surgeon and he said it was probably a pulled muscle. He took and X-ray and determined I was fine (that's right, an X-ray for a bulging disk) and prescribed my prednisone. Prednisone gave me some relief but as soon as I went off it my condition took a rapid turn for the worse. I flew in to the office across the country. Over the course of three days I went from laying on the floor of the office to losing control of my bladder and sphincter. I talked to the staff doctor at the onset of the significant pain and he prescribed prednisone again. I told him I was having leaks and he continued to say the prednisone would help. It was not until I got out of my chair and completely lost control of my bladder that I knew something was seriously wrong. I called the doctor back and he told me to go to the ER. I had to wrap a towel around me as I could not control my bladder as a coworker drove me to the hospital. I had lost anal wink and my hemorrhoids and bowel were starting to protrude. After a quick MRI I was off to surgery. It had been less than 10 hours since the onset of bladder problems. The first two weeks were awful. My wife (who has been truly, truly amazing) had to fly in and we had to stay in a hotel because I could not fly back. I had a catheter inserted and had a difficult time emptying my bowels. I was given laxatives and ended up pooping on the floor while trying to get dressed and again twice in the shower. The worst part was actually the hemorrhoids. They hung  out constantly and developed lacerations from the friction of my diaper. They hurt so badly I was ready to go back under the knife less than a week later to have them removed. I finally flew back home more than 2 weeks later. The first night I was at home I developed a fever and rushed to the ER again. I had another MRI and a spinal drain to remove fluid buildup and to test for infection which came back negative.

 I am now almost 4 months out. I get around fine and can walk over a mile or so but have a noticeable limp. I cannot push off my left foot and my calf is severely atrophied. I still have a catheter and my hemorrhoids will still hang out from time to time causing the need to wear a diaper intermittently. Talking to my second surgeon he is of the opinion that my first surgeon did not remove enough of the disk nor take into account the severity of my stenosis. He obviously should have ordered another MRI after I presented with the same symptoms. He was certainly lazy and not up to the standard of care. 

I was able to have sex with my wife last week. I removed the catheter and replaced it with a new one myself. I had to take Viagra which worked good not great. The first time felt like my penis was being poked with pins and needles and was not enjoyable. The second time, a few days later, was much better but I was not able to ejaculate.

To most people I just have a limp and a sore back but they don't know the more debilitating aspects. I am one of the lucky ones who had the decompression soon after the onset of bladder/bowel problems which we know is a significant factor. I have recovered a good deal in 4 months. But, it has significantly changed my life. I am a former collegiate athlete and now I cannot run nor exercise more than light  walking (I do not mean to take this for granted as I know some can barely walk at all). I have to plan sex with my wife which is not the end of the world but I wish I could be available like I used to. She has dealt with so much because of this and the worst part is I want to be normal for her more than myself. I want to live the life of a normal 36 year old man.

I'm sorry I rambled on. I hope this helps someone as all your stories have helped me.

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