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Cauda Equina Syndrome - Experience

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Comment from: hopeitgetsbetter, 35-44 Female (Patient) Published: March 12

I had a history of chronic low back pain for 6 years which flared up and then got better. My back was not currently hurting when one day I was holding my daughter and moved the wrong way and I heard a pop. Over the next 24-48 hours, I had extreme pain and progressive numbness in the rectal and upper leg area as well as an inability to urinate. I was lucky to see a surgeon who recognized the CES symptoms immediately. He ordered a STAT MRI and operated two hours later. I am now 8 months post-op and I still suffer from moderate back pain from a higher degenerating disc and numbness in my rectum, perineum, and legs. I am grateful that my symptoms were diagnosed so rapidly, but still suffer the emotional ups and downs of the recovery.

Published: January 22

I am in a real difficult situation. I have all the symptoms described for having ces. I am unable to take any pain killers other than paracetamol which does nothing. I can't even sit down because of the pain and numbness in my groin. My doctor refuses to send me for an MRI even when he knows that I have all these symptoms. I live alone many miles from any family and after living with this chronic pain for many years it's impossible to make any friends as I am constantly house bound. To be honest I now realize I needed help years ago and have been let down by my doctor.

Comment from: johanna, 35-44 Female (Patient) Published: February 02

This was the worst experience of my life! I suffered 18 months of agony and was told that I just had trapped nerve. I ended up being paralyzed from waist down. I had severe spasms where my legs would shoot out involuntary with awful pain and I had no control of my bladder. I was rushed for an MRI scan then to another hospital for emergency surgery. I had a fantastic surgeon. I am now able to walk even though I still have partial paralysis and pain.

Comment from: MrComaToes, 45-54 Male (Patient) Published: December 02

I had experienced back pain most of my adult life, but nothing like the pain that nearly knocked the breath out of me when I carelessly turned while lifting a moderately heavy object. It took a week of immobility pain and weakness, second and third opinions to finally be diagnosed correctly as suffering cauda equina syndrome. Only hours after that diagnosis I had an MRI which showed my spinal canal pinched down to within 3mm of complete closure and was on the operating table undergoing an emergency major back surgery. Thanks to my treating physician and my neurosurgeon, two and a half years later I am stronger than I was prior to the injury (lap swimming for therapy) and I have very little if any back pain at all, less pain than practically my entire adult life. For almost two years my only residual aftereffect was a stiff lower back upon waking but even that has totally subsided. I AM the one percent, one of the lucky persons who not only manages to regain some semblance of themselves but actually in a strange twist benefited from going through this difficult pain-filled and life threatening experience.

Comment from: Malcolm, 65-74 Male (Patient) Published: August 31

I had a failed back operation for a L5 Disc about 30 years ago but still suffered pain. Then 18 years ago I went to a pain clinic and was treated with an epidural using Depo Medrone. Upon being discharged in the afternoon I went home and slept until the next afternoon when I woke I had a strong urgency to pass water but found I could only dribble and could not flex my pelvic muscles. I also had sudden acute pain in the outside of my right foot and loss on feeling there also, and severe, restless legs. I finally was seen by a neurologist who after scans diagnosed cauda equina syndrome.

Comment from: 25-34 Male (Patient) Published: May 04

I have the diagnosis of Cauda Equina Syndrome. I had what seemed to be pulled back muscles that manifested every six to eight weeks, until one afternoon, I did a few stretches, and lost all feeling from the waist down. I went to a hospital which I knew had an MRI scanner. I was scheduled for emergency surgery and I am thankful for the skilled surgeon who was on duty. It turned out to be a herniated disc that encapsulated the spinal canal. It has been over three years and still see slight progress, it is amazing on how minuscule the graduations you can gauge yourself by. I can walk for short lengths and no-one has a clue. I still lack feeling/sensation along the saddle area, down the back of both legs and the outer half of both feet. Still I cannot jog, most of my walking is done on my heels and I try to imitate the roll of the heel toe effect during walking. Ambulation looks okay, but there is no strength. I have yet to feel my groin area since, "still have hope". I have a sense the sphincter muscles respond in some way, yet still no visual sign.

Comment from: dave, 45-54 Male (Patient) Published: November 10

I have had CES for 14 months my best advice would be to get a MRI scan as soon as possible. This is the only way to find out if you have CES it truly is a terrible thing to happen to any body. I am able to do most things but I am unable to lift anything more than 10 kilos. It all started with numbness in both legs, and within 24 hours could not lift my legs. I also could not empty bladder or bowels, and within 30 minutes of having a MRI scan I was having emergency surgery. My life will never be the same as it was. And there is a risk it could come back at a later date.

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Patient Comments & Reviews

The eMedicineHealth doctors ask about Cauda Equina Syndrome:

Cauda Equina Syndrome - Symptoms

What were the symptoms of your Cauda Equina syndrome?

Cauda Equina Syndrome - Treatments

What was the treatment for your cauda equina?

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