Staying Strong!

The first few weeks of a Cauda Equina Syndrome Diagnosis

Greetings!
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If you’re reading this article, I’m guessing you are one of the many searching for more information regarding cauda equina syndrome (CES). You’ve definitely come to the right place!

I was diagnosed with CES in December 2015 and it has been quite the journey.  I’d like to share with you my experiences during those first weeks and how I was able to stay strong during this time. Like many of you I was misdiagnosed by several medical providers, they missed the CES Red Flags.

​After my back surgery to relieve the pressure on my nerves, one of the first follow-up visits I remember was my surgeon coming into the room and asking me to wiggle my toes.  I could somewhat move the toes on my left foot, but when I tried to move toes on my right foot, I could only move it a fraction of an inch.  The surgeon then said “Great!”- but I felt differently.  A week prior I was walking, driving and doing everything normally – and now I’m lying prone on a bed in an ICU.  But I was happy my excruciating back pain was finally gone!
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I’ve always been of the opinion that you need to be happy for every day on this earth.  The first few weeks of CES tested this belief in many ways.  The darkest moment for me was when I was sent to a rehabilitation hospital a few days after the surgery.  The nurses wanted to give me a shower.  They helped me off the bed, wheeled me to the shower and had to help me stand up and grab the handrails in the shower.  I started to cry – I was thinking my whole life is now turned upside down – “What in the world will I be able to do like THIS???”  But after the shower I realized that whatever was in front of me, I was going to fight like mad to make the most of it.

Only a week after the surgery I woke up and was having trouble breathing.  An ambulance was called, and I went back to the hospital.  I was diagnosed with a pulmonary embolism – most likely from being on my back for days.  Finally, on Christmas Eve I was well enough to go back to the rehab facility.  Although I knew I was not coming home for the holidays, I was delighted to be alive and out of the hospital!

The next few weeks were challenging.  I wasn’t home for the holidays.  There was no New Year’s Eve closeness with my wife at midnight.  One doctor at the facility (who I saw once and never saw again) told me “You’ll be fine in a month!”  A day later, the facility gave me a book with a smiling guy in a wheelchair on the cover.  I then began to research what CES is all about – and I determined I was going to do everything in my power not to be a smiling guy in a wheelchair!!

Since CES affects the bowels and bladder, I had a problem with incontinence as well as not being able to eliminate.  One occasion I had to be manually evacuated and occasionally needed catheterization.  My wonderful wife (on one of her multiple visits) taped a picture of a waterfall in the bathroom – which helped!

I spent the next three weeks in rehab learning how to walk again.  I was fortunate that my employer allowed me to work from the rehab facility, and then from home after I was released from rehab.  (The experience of working from home has certainly come in handy in this age of a pandemic!)  I also spent time searching the internet for diversions.  I found a music video by Pentatonix called “Sing”.  It’s amazing how this one video struck a chord with me – it was able to pick me up when I was having a dark time – I watched it multiple times – and still watch it occasionally to this day.

If you’re new to the affliction of CES, you’ll find that the physical effects are different for everyone.  But anyone that has CES needs to deal with physical effects as well as emotional effects.  There’s no magic bullet for either.  But I strongly believe that a positive outlook is the most important thing you can do to help you get through rough times - no matter what you are facing!  Focus on the good in your life – even if it’s something simple such as waking up to a new day.  Be thankful for your family and friends as they will lift your spirits.  Find something you can do and enjoy doing – and do it!!!

And I am certain a positive outlook continues to help me in my recovery!  I’ve gone from using a wheelchair – to using a walker and a special foot brace for my drop foot – to using canes – to NOT using a cane.  Did my positive outlook help in my healing? Absolutely!!!

Please take care, stay safe and keep looking up!!  

Terry