Cauda Equina Syndrome Chronic Pain and Provider Education


It has been raining for over a week now, and the weather is wreaking havoc on my body. I’ve been in bed for almost a week, and feelings have returned that I haven’t had since the surgery. The electric jolts are back, they just come out of the blue, zipping from the bottom of my spine all the way to the top. From the waist down I feel nothing but pressure in my body, and it hurts. My right butt cheek is swollen like a balloon, as well as behind my right thigh. I have no appetite and feel like I have morning sickness, but I don’t. It is just the swelling leaving my body after the big build up. It seems like as I sit on the couch and watch the clouds roll in, my body builds up with every moment of the storm. I am miserable.

I forced myself to go on the exercise bike the other day for thirty minutes, and I also did a bunch of stretches. In total, I exercised for an hour. I tried to make it fun, and turned up the tunes to drown out the rain. It does feel good once I get into it, my muscles feel like they are screaming to stay alive, I don’t have a choice.

Every time I exercise, my legs feel like jelly afterwards, and it is incredibly hard to walk. In fact, I usually wind up laying down for about an hour before I can get up and go again. Not this time….

I’ve been cooped up in the house forever, so when my husband asked me if I’d like to go to the store with him, I said yes. In fact, I’m pretty sure I surprised the heck out of him.

You see, I’ve only really been walking for about a year, and along with all of the physical pain is emotional pain. Not only do I have to learn to live with chronic pain which is debilitating in itself, but I’m on an emotional roller coaster as well.

This is where it would probably have been beneficial for me to talk to some kind of life coach, because there are definitely emotional phases to Cauda Equina Syndrome, but I’m pretty sure I’ve gone through them all. So far I have gone through shock, anger, mourning the death of my body, and acceptance.

Those are a lot of emotions for anyone to have to deal with on their own, especially when they’re suffering.

For the longest time, an outing for me was just going for a ride to the store, and then just sitting in the car, while my husband ran in. That was my big day out, because that was about all that I wanted to do. I did not want people that I knew to see me. I also made things much harder on myself than necessary. I did not so much as care about myself, as I did at what someone that I knew might think or say about me because they saw me with a walker or in a scooter at a grocery store. I would force myself to use just a cane when I would go out anywhere, to prove that “I can do this.” All because I want to be tough and not give in.

Maybe it’s a good thing about the rain then, because this time I told my husband that yes, I do want to go to the store, and I want to bring my walker. The look on his face was priceless.

We got there, and I got out and went rolling into the store while my husband went and parked the car. It was so much easier than using the cane, and yes, I did see people looking, but for once it didn’t bother me. In fact, I was really glad that I brought it because it has that little seat on it that certainly came in handy for when my legs got wobbly in the store. I could sit and take my time looking at what was on the shelves, and it really made going out easier. I made it so hard on myself for the longest time just to prove to myself that I could go out as normally as possible. I think I was still clinging to hope that things would change, but they’re not, and that is okay.

This was the first time that I’ve actually enjoyed being out and I was able to walk around the whole store with my husband. It was nice. It was also the first time that I’ve gone into a store without planning the whole route in my head before going in. I was able to take my time and I enjoyed it. I no longer care what I look like. If I need to use my walker, now I am okay with that. I have no need to push myself. I am not out to impress anyone and I don’t need to explain myself.

I’m tired of trying to look good, because I am not good. I am not doing well. I hurt. I’m tired of throwing up, and I’m tired of nobody being able to help me, because I do need help. This is just all wrong on so many levels.

I was misdiagnosed, for a whole year. I was treated like I was seeking medication at the hospital's when all I wanted was for somebody to help me. I should have had an MRI, which would have shown that I had a large herniated disc that was compressing my Cauda Equina bundle of nerves. Instead, numerous Dr.’s and several hospitals missed the red flag symptoms, which has now left me with a chronic condition called Cauda Equina Syndrome. The nerve damage is permanent and I am now left with chronic pain.

I’m amazed there is even a name for this. Only a handful of Dr.’s seem to know what it is, and that has to change. People are being misdiagnosed every day and Cauda Equina Syndrome does not discriminate. It doesn’t seem to matter what age, sex, nationality, or race you are. I’m not alone, and I’m not the only one this has happened to.

I often wondered and planned all these scenarios in my head about what I would say or do if I ever got the chance to see one of the Dr.’s that misdiagnosed me. Like how my life is ruined, in pain every day, and why couldn’t you have just ordered an MRI?

Well, I got that chance! I was wearing my bright red CES swag, and this time when my husband went to the check-out, I was able to sit on the little seat on my walker and wait. I was really happy, and then I noticed the gentleman behind my husband at the check-out. He saw me, and I saw him read the shirt. I also saw him look away and not be able to look back at me. He was one of the Dr.’s that had misdiagnosed me.

All of the nasty, vicious things that I wanted to say were pointless at that moment. I was having fun with my husband, and just seeing how he was unable to look at me told me all that I needed to know.

If you are in the medical field, it is imperative that you get educated on the red flag symptoms of Cauda Equina Syndrome. Providers can join the Cauda Equina Foundation and get educated on what the red flag symptoms are, as well as follow along with the results from our upcoming research project. You need to get involved and we need you. Toss the three words around at your place of work, Cauda Equina Syndrome.

It is much nicer to hear stories of success and patient’s being diagnosed in a timely manner by Dr.’s that KNOW what Cauda Equina Syndrome is than to hear about all of your failure’s around the world. I have researched everything I could possibly find about it, and nearly every report that I have pulled up comes to the same conclusion-that Cauda Equina Syndrome is missed 75% of the time. This has to change.

Too many lives are being destroyed and at some point you have to take responsibility for your actions. When a patient shows up in your ER, and they are in excruciating pain that just won’t go away, order an MRI as a last resort. You have 48 hours to get that patient into surgery for the best outcome.

Take the time to get educated on Cauda Equina Syndrome, your knowledge could make a big difference in someone else’s life. To many people are being sent home with spinal injuries, and we are left to fend for ourselves. You wouldn’t do it to someone with a spinal cord injury, stop doing it to us. You could be saving a life. People are committing suicide and I was almost one of those statistics.

Join the Cauda Equina Foundation and get educated on the red flag symptoms of Cauda Equina Syndrome, there are thousands of people that are not getting the proper healthcare because of your mistake. This has to change.

#chronicpain #CaudaEquinaSyndrome #CaudaEquinaFoundation #ProviderEducation

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