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!

​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

Risk Factors of Cauda Equina Syndrome:
Epidural Steroid Injections       
Sciatica               
Chronic Low Back Pain
Recent Child Birth 
Recent Epidural     
Lumbar Puncture
Fever with neurological changes
Recent Ataxia                    
Congenital Disorders 
Bladder/Bowel Disturbances
Sexual Dysfunction           
Lumbar Surgeries
Rheumatoid Arthritis
Ankylosing Spondylitis      
Spinal Stenosis          
History of Blood Clots
Recent Trauma/Injury                 
Neoplastic History      
Paget’s Disease
Arachnoiditis              
Blood Thinners           
Degenerative Disk Disease
Tarlov Cyst
Scoliosis
Ehlers-Danlos Syndrome
Tuberculosis
Spinal Stenosis

Diagnosis:
Initial signs and symptoms may be subtle and differ amongst etiology.16

Patients with sciatica and low back pain (LBP) should be screened for other less obvious signs and symptoms of CES.16

MRI is the Gold Standard of Diagnosis; however, CT myelogram and CT may be used when MRI is unsafe or unavailable. X-ray will not demonstrate CES. 16

Failure to evaluate urinary retention, bulbocavernosus reflex, saddle anesthesia (soft touch and pin prick) and rectal tone are the most common causes for litigation in the event of misdiagnosis. 16

Urodynamics should be evaluated; in the emergent setting, pre and post void
volumes are sufficient. 16

Treatment:
Conservative treatment is NOT recommended in a diagnosis of CES with pathomechanical etiology; surgery is an absolute indication in the presence of mechanical causes of CES.15, 16

There is NO consensus on timing of surgery from diagnosis; though there is strong agreement that the surgery should be done as soon as possible; 24-48 hours form onset of symptoms (not from clinical presentation).5, 9, 10, 12, 14,15, 16

Cauda Equina Foundation, Inc. recommends treatment and/or surgery within 24 hours of onset of symptoms based on literature review.14, 15

Cauda Equina Syndrome Prognosis 14, 15, 16:

1. Etiology
2. Speed of onset
3. Degree of neurological symptom deficits
4. Number of levels involved
5. Timing to treatment from onset of symptoms

CES diagnosis is very difficult to recover from, even when treated appropriately. There is no cure, only symptom management.

Following a literature review, stakeholder Delphi study, and stakeholder consensus meeting; Patient Outcome Measures of Cauda Equina Syndrome have reached a consensus. Look for publication coming soon. Follow-up research into the process of assessment of outcome measures is in the future.

References:

1. Dugas, Andrea F., Jason M. Lucas, and Jonathan A. Edlow. "Diagnosis of spinal cord compression in nontrauma patients in the emergency department." Academic Emergency Medicine 18.7 (2011): 719-725.
2. Pope, Jennifer V., and Jonathan A. Edlow. "Avoiding misdiagnosis in patients with neurological emergencies." Emergency medicine international 2012 (2012).
3. Fraser, Stuart, Lisa Roberts, and Eve Murphy. "Cauda equina syndrome: a literature review of its definition and clinical presentation." Archives of physical medicine and rehabilitation90.11 (2009): 1964-1968.
4. Bin, M. A., et al. "Cauda equina syndrome: a review of clinical progress." Chinese medical journal 122.10 (2009): 1214-1222.
5. Jalloh, Ibrahim, and Pawan Minhas. "Delays in the treatment of cauda equina syndrome due to its variable clinical features in patients presenting to the emergency department." Emergency medicine journal 24.1 (2007): 33-34.
6. Gstaltner, K., et al. "Sacral nerve stimulation as an option for the treatment of faecal incontinence in patients suffering from cauda equina syndrome." Spinal Cord 46.9 (2008): 644.
7. Schatzker, Joseph, and George F. Pennal. "Spinal stenosis, a cause of cauda equina compression." The Journal of bone and joint surgery. British volume 50.3 (1968): 606-618.
8. Dyck, Peter, et al. "Intermittent cauda equina compression syndrome: Its recognition and treatment." Spine 2.1 (1977): 75-81.
9. Delong, W. Bradford, Nayak Polissar, and Blažej Neradilek. "Timing of surgery in cauda equina syndrome with urinary retention: meta-analysis of observational studies." (2008).
10. Shimada, Yoichi, et al. "Clinical features of cauda equina tumors requiring surgical treatment." The Tohoku journal of experimental medicine 209.1 (2006): 1-6.
11. Shi, Jiangang, et al. "Clinical classification of cauda equina syndrome for proper treatment: a retrospective analysis of 39 patients." Acta orthopaedica 81.3 (2010): 391-395.
12. Kostuik, John P. "Medicolegal consequences of cauda equina syndrome: an overview." Neurosurgical focus 16.6 (2004): 39-41.
13. McCarthy, Michael JH, et al. "Cauda equina syndrome: factors affecting long-term functional and sphincteric outcome." Spine32.2 (2007): 207-216.
14. Srikandarajah, Nisaharan, et al. "Does early surgical decompression in cauda equina syndrome improve bladder outcome?." Spine 40.8 (2015): 580-583.
15. Srikandarajah, Nisaharan, et al. "Outcomes Reported After Surgery for Cauda Equina Syndrome: A Systematic Literature Review." Spine 43.17 (2018): E1005.
16. Bin, M. A., et al. "Cauda equina syndrome: a review of clinical progress." Chinese medical journal 122.10 (2009): 1214-1222.

I have practiced as a Registered Respiratory Therapist since 2005, back in the “good old days” of paper charting*. Back in the days when we charted what was relevant, that we were there, and what we did. This giving us the time to spend with the patient, building rapport, trust, communication, and noticing what the patient isn’t telling us, the subtle nuances of assessment. Now as a chronic patient myself, I see the failings of healthcare since computerized charting. What a tragic loss.

​I have chronic cauda equina syndrome (C-CES), a rare spinal nerve root injury within the lumbar spinal canal causing a multitude of symptoms and co-morbidities resulting in loss of quality of life, social relationships, and independence.

This year alone I have had multiple hospital stays and over 1,000 doctor’s visits over the years since being diagnosed with cauda equina syndrome (CES) in 2012. I have noticed less and less interaction between my healthcare practitioners and myself. I no longer see their eyes, and in many cases I see the backs of their heads while they are buried in computer charting. They ask questions while facing a screen and inputting answers; missing facial expressions, tells, and opportunities to ask follow-up questions based off clinical observations of body language. They have become automatons and data entry specialist. Sure, they still touch me and provide treatment, but as soon as they do them move on to the computer to input their findings.

While concentrating on computerized charting, they can’t concentrate on patient communications and questions. I can’t tell you how many times I have been cut off by someone from my healthcare team due to computerized charting because quote, “let me finish inputting this.” I have a chronic illness, by the time you finish, I may forget what I was going to say due to the brain fog associated with chronic illness. You just missed an opportunity to help me, maybe even save my life.

This isn’t your fault. More and more administrators and government officials wanting to “improve” healthcare write policies that are out of touch with reality of direct patient care. They don’t practice physical patient contact and interaction, how can they know about the effects of their policies?

It is through us, the providers and the patients to advocate for our needs. We must take back the patient-provider interaction. We must be allowed to properly care for our patients, not be glorified data entry specialist. We don’t go to college for years, going literally through blood, sweat, and tears, getting bodily fluids on us (that don’t even belong to us), to lose the reason we went into healthcare in the first place; to improve quality of life for our patients and to provide empathy and compassion.

Don’t miss your opportunity to diagnose acute cauda equina syndrome because you had too many things to click on, many of which aren’t even relevant to the reason your patient is being seen. Such as, “Do you wear glasses?” What does that have to do with my back hurting me right this second?

Acute cauda equina syndrome is a medical emergency where minutes count! Asking pointless questions not relevant to the patient’s chief complaint ticks down that time clock. Again, not your fault. The more time spent with your back turned to the patient clicking boxes not relevant to the patient’s complaint, the more opportunity to miss important diagnosis that are time sensitive, such as acute cauda equina syndrome.

Help us improve the quality of life and care for individuals living with cauda equina syndrome. Cauda Equina Foundation and its members that suffer with chronic cauda equina syndrome, many times due to misdiagnosis and delays in care, ask that you call and write your legislators and healthcare system administrator(s) to let them know how computerized charting has affected your ability to give the best care to your patients. Offer suggestions for improvements and change. Put the care back in healthcare.

Cauda Equina Foundation, Inc.
Serving to improve the quality of life and care for individuals living with cauda equina syndrome.

We are looking for qualified healthcare practitioners to join our Medical Advisory and Review Board, learn more here.

*Due to cauda equina syndrome diagnosis, I no longer work as a Registered Respiratory Therapist.