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***Material on this Website is provided for informational purposes only. It is not a substitute for medical care, rehabilitation, educational consultation, or legal consultation. This Website contains general information which may or may not apply to individuals. This Website can not and does not address each individual’s situation and needs. I encourage all persons with chronic illness, their family members and concerned parties to seek professional advice for any specific questions and concerns. I have made every effort to insure that content is accurate, correct and current and am not liable for any unintentional errors. Links to other Websites and contacts have been carefully chosen, but do not imply endorsement and I am not responsible or liable for their information and contents. Under no circumstances, shall the authors and publishers be liable under any theory of recovery for any damages arising out of or in any manner connected with the use of information, services, or documents from the site.***
The information in midnightdemon is not intended to substitute for medical professional advice but is to be used only as an aid in understanding this condition. This site is not maintained by physicians. No medical decision should be made based on information in this site. A physician should always be consulted for any health problem or medical condition. This site is a compilation of CES patients’ thoughts, ideas and discussions, which we hope you will find useful, but it is not medical advice.
My doctor is an idiot at times, especially when it comes to treating CES. He thinks that because I have no back pain, I should be ok. What he doesn’t realize is the damage is in my foot/ankle and that is what is causing me the most pain.
WHAT IS CES?
The syndrome arises through nerve damage to the cauda equina, the horse’s tail of nerves that come after the spinal cord.
There is a specific pattern:
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Severe pain in radicular (nerve root) pattern: back, buttocks, perineum(saddle area), genitalia, thighs, legs.
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Loss of sensation: often tingling or numbness in the saddle area.
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Weakness: in legs, often asymmetric (one side)
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Bladder/bowel/sexual dysfunction: incontinence / retention of urine; incontinence of feces; impotence/loss of ejaculation or orgasm
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Loss of reflexes: knee/ankle reflexes may be diminished, as may anal and bulbocavernosus. (a muscle of the perineum, the area between the anus and the genitals)
Any of these symptoms arising suddenly is a medical emergency and should be treated as such. These are the red flags of CES. You do not need ALL of these symptoms to have a case of CES. Any compression of the Cauda Equina nerves (shown through an MRI) IS CES!
I have had CES, Cauda Equina Syndrome, for the past 12.5 years. In the first few months it was difficult. I didn’t have supportive people in my life I could go to because there was no one I could find that knew what CES was. Recovery was slow. Painfully slow. It took almost a week till I was able to move the toes on my foot after surgery. It took almost three months to learn to walk with just a cane. Luckily the first go round did not affect my bowels or bladder. I had some retention of the bladder but this was thought to stem from my use of opioid medication. My surgery was at the L4/L5 level on the left side.
My second surgery (yes you can get CES twice) was at the L2/L3 level and it really caused me to become disabled five years later. At first my left leg was affected and still is. I still get nerve pain in my thigh at times, especially if I sit too long. My ankle/foot is another matter.
When I first got CES, I fell and sprained my left ankle while it was numb. Because I had no sensation in my foot/ankle I didn’t realize the extent of the damage until feeling came back, weeks later. Then I resprained my ankle in 2010 and again in 2011. This invariably lead to a condition known as CRPS (complex regional pain syndrome).
I have what I term CES-Lite. I didn’t have the textbook case of CES, where you lose function of your bowels and bladder, sexual function, weakness in one leg or both, loss of sensation in the saddle area, etc. I just had leg and back pain. My CES was caught within the 24-48 hour window. Anything greater than that risks permanent nerve damage.
It is possible to recover from CES. You just have to give yourself a LOT of time and perseverance. What one goes through is not going to be the same for another, even if they have had the same surgery at the same level. It is possible to walk again but you need to work hard at it. Going to a physical therapist that has had nerve damage experience is very helpful. Typical recovery time is anywhere from 9 months to two years or longer. It all depends on the circumstances the individual has faced and if the surgery itself didn’t cause more damage. This is all my opinion and I am not a medical professional. I am just writing this to inform those that come to my site looking for answers to these questions.
See my page about CES 101 to help with nerve pain and other complications from CES.
midnightdemons7 
I read your blog with interest because I have an adult son who was diagnosed in August 2012 with CES.I am his primary caregiver from that day forward so I can offer a different slant on the condition than those who are the primary victims.Luckily I have a degree in nursing and retired in approx 2006. This background was the life raft so to speak which has guided us to continuing improvement. The people who love and care for victims in their own family face daily inner strength just to keep a brave face and a optimistic outlook.
I feel for all of you who are struck down by this painful,chronic ,unpredictable, mostly ignored by the medical professionals.Few have any clue at all.This disturbs me because with education and preventative medicine provided by first-line presentation and assessment of varying symptoms and patient history/risk factors. This is usually not performed and the results are a life long disability that depends heavily on early aggressive treatment.
I have serious doubts about the alleged rarity of CES….simply ignored and the person just really never even knows. The incidence of back pain is simply too high for me to buy the theory of this injury being RARE.
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Mike,Thank you for being wiling to take this site on. As always, in all areas of my life (CES as well) the more information I have the more satisfied I am. Before my back surgery for degenerative disc disease, I had never heard of cauda equina, nor had I been warned about it before my surgery. One day I was fine, the next I had the surgery and from that day on , I never one time voided “normally”, only with a catheter of one type or another, indwelling, “in and out” cath, self-cath(which has been very difficult to do since I have a case of “classic CES,
of majorly frustrating), I am incontinent in both areas of bladder and bowel (has created some very embarrassing situations) I wish I owned stock in some of the feminine product lines. My husband, who is majorly supportive, certainly wishes he did also. I had a second surgery by same surgeon, termed exploratory, and no compression of any area of spine(esp. that the cauda equina area was found. Hence, began my search, by phone, e-mail, internet search of the major and minor spine centers and those departments of many, many medical centers in the United States. I was looking for a doctor who had an expertise, even an interest or a research study or a protocol for the treatment of cauda equina syndrome. Not to my surprise, I have not found that person. Does he/she exist ? I still have hope that he/she does. This syndrome is horrible when one feels hopeless. Here is where I can link my case (as have previous persons on this site} to suicidal ideations.
As it is very late, and I had a long day {including two doctors appointments) with lots of walking and the classic symptom of the exhaustion of CEs, I am going to bed now.
Thank you, once again, Mike, for being here to offer some of that information that I cherish so much, and the sharing. Always, Judy
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This is very informational and inspirational. I am glad that you are around to help people understand and learn about what to do and what it takes. Even though the pain is unbearable for you. I appreciate this education, and I am sure I wouldn’t have gotten it elsewhere.
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