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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.
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:
Severe pain in radicular (nerve root) pattern: back, buttocks, perineum(saddle area), genitalia, thighs, legs.
Loss of sensation: often tingling or numbness in the saddle area.
Weakness: in legs, often asymmetric (one side)
Bladder/bowel/sexual dysfunction: incontinence / retention of urine; incontinence of feces; impotence/loss of ejaculation or orgasm
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
7 thoughts on “Answers about CES”
Glad you found it 🙂
I had CES, had emergency surgery in January of this year. Still recovering. Thank you for your page and information. It has been very difficult finding a case like mine as none are the exact same.
Thank you for sharing this. I seem to have recovered well from my fall, although I do get the occasional little “tweaks and twinges” here and there, I have mostly attributed it to just overdoing it. I am going to discuss with my doctor, perhaps a back check-up would be warranted every few years. Thanks for the head up that most PCP’s are unaware – I will print some resources to take to my next appointment. 🙂
CES must be wicked sucky. Awesome that you caught it so soon and had a great neurosurgeon to fix ya up! I have nerve pain in my butt, legs, and well everything down to my toes. And then up my spine, too, and sometimes everywhere else. (fibromyalgia) total suckage. thankfully, as long as I don’t do dairy my nerve pain is kept at bay. hope you’re feeling better these days!
Ugh, I did shit my drawers once, luckily at home, and now I stay away from fruits and veggies. I don’t know why people get saddled with these awful conditions. I get so depressed about the whole stinking situation. Hopefully not actually stinking, such a great fear and isolating as hell! Take care….
that sucks about your father. It took a 16 hr ER visit to get the MRI at 1 am and then I was in the operating room at 830. I was lucky the only problem with my bladder is retention, though I will leak if I am full. I don’t have the sense to go like I used to. I often have to think about it and by then it is too late and I will leak. Nothing major, like flooding, but it still wears on my self-esteem. I have had bowel accidents when I am loose. I just don’t feel it and now I am terrified every time I pass gas. I had no warning one time, let loose and crapped myself real good. I was so embarrassed, but grateful it was at home and not outside. I would have died if it happened outside my house. There would be no way for me to recover mentally. I have found that taking fiber is not a good idea with CES.
I don’t get how incontinence can be “psychogenic”. that is terrible!
Wow. I am so incredibly sorry that you have to live with this. I have cervical spine stenosis, which will eventually require surgery that might possibly lead to…but I’m not sure I’ll let it get to that point. My father had classic CES at the end of his life. When his symptoms first started he was young enough to be operable, but he had many other co-morbidities that eventually made that impossible; and as you say, if it’s not caught VERY early, the chances of saving the damaged spinal nerves decreases with each moment that they are compressed and starved for oxygen. I think it’s the minority of CES sufferers who have their condition diagnosed within the 48-hour window, since in these days most symptoms, even alarming ones like incontinence, are written off as psychogenic, especially if the sufferer has a psych diagnosis. Thanks so much for your amazing blog, full of great information and your personal experience of living. Blessings–Laura