Welcome to Cauda Equina Syndrome: What you need to know Now.

Amanda Proctor August 2012- Post emergent Laminectomy & Discectomy for Cauda Equina Syndrome (CES)

I get how you may be feeling right now. Lost, confused, angry, frustrated, sad, useless, lonely, misunderstood, regretful- yet, determined to fight this and beat the odds. I know, I was where you are almost 10 years ago (at the time this was written). What is important for you to remember is you don't have to go through this alone. We are here to help guide and support you.  
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Welcome!
 
Sorry, we had to meet this way! I am Amanda Proctor, Founder, President, and CEO of Cauda Equina Foundation, Inc. I was diagnosed with cauda equina syndrome (CES) in August of 2012, I am almost 10 years into my diagnosis. I am now diagnosed with Chronic Cauda Equina Syndrome (Ch-CES)- but you don't need to worry about that just yet- and hopefully, you never will. 
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What Now?! I need a grabber stick for my grabber stick. CES is so frustrating!

The first things I want to say to you are:

1. Be kind to yourself- you're doing the best you can.
2. CES is a family diagnosis because it affects the entire family- bring your family into this process. Get them educated on CES too.
3. If you have children, let them help you. 
4. Go to Mealtrain.com and let your friends and family cook meals for you- its a huge help and one less thing for you and your household members to worry about. 
5. Let people help you! You need to focus on resting, healing, and recovery. 
6. Keep a journal. The healing process is slow, sometimes it's so slow you may. not realize that you are in fact, getting better. Keeping a journal can help you see your progress. You can keep an electronic one on our support group page at CES.Inspire.com.
7. Get counseling for yourself and your entire family unit. This is a family diagnosis and it really can affect the mental health of everyone in the household. Don't wait for it to be a crisis situation. Find someone early that can help with grief counseling, family counseling, and chronic/traumatic illness/injury counseling.

So, What now?

How do you fight something that you may not be able to spell or are unsure of how to pronounce, yet- something I had to learn. I've also learned that many of my healthcare providers can't pronounce it either, I correct them and educate them. 

So, how do you say Cauda Equina Syndrome?
 Cod-a E-qw-eye-nah Sin-drum

Things I wanted to know first.

Will I recover? By how much? What do I have to do to recover? Who do I need to see? How do I shower? How do I use the bathroom? How do I get my socks on? How do I pick up the grabber stick that picks stuff up for me that I dropped on the floor (see above picture- why yes, that really is me taking a picture of life's irony)? And a million other things going through your mind. Slow down. Breathe. We've got your back (pun intended).

Will you recover?
I wish I could tell you unequivocally, Yes! But, the reality is no one knows, not me, not the Foundation, not your fellow CES Warriors, and not your doctors or therapists. It's all probabilities based on a lot of factors and it sucks to not know or have the answers to your questions, believe me, I know, I've been there. But look on the bright side, at this stage, recovery IS a possibility. It takes time and it's slow and frustrating at times, but, at this stage in your diagnosis anything is possible.

I remember this one day, I was doing my therapy at home. The occupational therapist had given me a shoebox with rice in it to write the alphabet in with my feet. This was supposed to help me move my feet again and build sensory back. I got good with the motion part except flexing my feet and the sensory not so much, but that is not the point of this story. What is the point is one day I got so frustrated that I couldn't hardly move my foot and I couldn't feel the stupid rice that I kicked the box!

Picture this, you're my husband, you're in the other room and you hear &$*@! and a loud crash noise. He comes running into the bedroom to see that I have kicked a shoebox of rice all over the carpet in our bedroom. Now, to truly understand this situation, what you have to know is that at this point he had been waiting on me hand and foot for a month. I was still not able to walk around at the time- I was fully dependent on him to do everything. I was no longer working, I was no longer doing the household shopping, cooking, cleaning, or taking care of the animals. He had to take on everything by himself including taking care of me, while still working full time- from home because I needed 24/7 care. Needless to say, he was not having the best day. I quickly realized that I was not going to be the one that had to clean up the rice, then I started crying my eyes out- so now he's dealing with an emotional wife on top of everything. To his credit, he didn't even yell about it- actually he didn't say a word about it. He just cleaned it and that was that.

Yep, ten years later and we are still married and I constantly come up with new ways to cause chaos in our household. He doesn't come running when he hears a loud crash anymore- well, unless he doesn't hear "I'm okay" yelled out right afterwards that is.  

The point of me telling you that? Well, if you are the patient reading this, know that you will get frustrated. It's okay, and it's normal. Maybe don't kick a box of rice, but do find an outlet for your frustration. If you are the caregiver, friend, or family member, know that we get frustrated because our body doesn't work right and we have lost our independence- having you there to support us and clean our messes is the best thing you can do for us. Also know that you are allowed to get frustrated too- find a healthy outlet for your frustration and know that caregiver fatigue is a real thing- take breaks and ask for help! 

After 5 years of physical therapy with 3 months of therapy learning to walk on sand- I walked on the beach in Costa Rica for the first time since being diagnosed with CES. Never give up hope for recovery!- I'm happy crying in this picture.

Special Note:

There are different stages to cauda equina syndrome- if you are reading this, you have likely already been through the acute stage, or acute cauda equina syndrome (A-CES). A-CES means that the injury to the cauda equina is currently happening and that is why A-CES is a medical emergency- the goal is to stop the injury from getting worse and to try to reverse any damage already done. Generally speaking those with the best outcomes have the least amount of symptoms when they are diagnosed and are treated within 24 hours of the onset of symptoms or from the time of known injury, but there are exceptions to every rule. That is why you will constantly hear, "Maybe", "It's Possible", "I don't know". Yeah, I feel your frustration, I remember it well. This is a marathon, not a race- and that sucks. Just don't forget- NEVER GIVE UP ON YOURSELF! Learn more about here.

Until next time,

Amanda Proctor
Kicker of Boxes of Rice
Director of Chaos
​CES Fighter!

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