Cauda Equina Syndrome


What was the treatment for your cauda equina? Submit Your Comment

Comment from: Problemo01 , 65-74 Female (Patient) Published: June 19

My doctor won't listen to me. I have had MRIs and ultrasounds. I have spinal stenosis, and my left leg locks. I urinate as soon as I stand up and have constant pain. I fear I have cauda equina syndrome. I am 74 and feel I will be crippled soon. I don’t know where to turn and if I am too old for any help.

Comment from: beely, 75 or over Male (Patient) Published: May 21

I am an 88 year old male with cauda equina syndrome diagnosed 18 months ago. Yesterday, 16th May, I had an epidural to ease the pain. I doubt this will be successful, they are now talking implants.

Comment from: Trackieb, 35-44 Female (Patient) Published: May 24

I was doing my dishes one morning and I coughed and I felt pain in my lower back. The pain was unbearable. I went to the hospital and they sent me for an emergency MRI. I came back and they just advised that my disc had slipped. I was sent for neurological block injections, which didn't work. I was still in a considerable amount of pain. One night it got unbearable, and I rung for an ambulance. I was taken to the hospital that would do my operation a few days later, due to the snow. When I came round after the operation I was told I had cauda equina syndrome (CES) and it was bad. No bladder/bowel function, paralysis in my right leg and the most unbelievable pain. I was sent to rehabilitation and spent six months learning to walk. I can now walk with two crutches, very short distances. I am mostly confined to my wheelchair I would not wish CES on anyone. It has changed my life forever and it will never go away.

Comment from: Whitney T., 45-54 Female (Patient) Published: November 14

Twenty years ago, while being a letter carrier, I ruptured two discs, the L4-L5 & L5-S1. I then, periodically, suffered from severe pain and bouts staying in bed for weeks at a time. About 3 yrs. ago the pain became chronic and I went to an orthopedic surgeon who said "by no means should you have an operation!” I was actually pleased that he said that and began seeing a pain management doctor for the moderate daily back pain and started physical therapy. Approximately six months later my L5-S1 collapsed onto my spine causing CES. I lost feeling from the top of my thighs to my waist, could not urinate or defecate and had no sexual feeling in my genital area. I had emergency surgery and was told there was no spinal injury but my spine was "shocked" and it may take up to 2 years. to get the paralyzing feeling to get better but it was told in may never recover completely. Two yrs. later I have almost complete bladder function, minor sexual feeling, but I have a paradoxical sphincter which makes it impossible to deficate without a fiber diet and I use diluted saline enemas to remove any bowel movement that does not come out by pushing normally which for me is straining. Another issue which arose about a year after my disc collapsed was my uterus prolapsed, possible from lack of muscle usage or from straining repeatedly while have BM. I have been told if any symptoms worsen I should have a discetomy on my L4-L5 with relief of severe compression with small cushions? between the discs. I am hoping that eventually less invasion operations using lasers and smaller incisions might be possible in my case. I do feel as if my paradoxical sphincter will never return to its normal state although the inner muscles have been tested and have normal strength. All in all I feel lucky in most senses but I wish the surgeon had operated before the collapse had occurred.

Comment from: grandmahouston, 65-74 Male (Caregiver) Published: December 02

My husband had an epidural. After the epidural he experienced severe pain and blood clots developed. He had surgery about seven months earlier and an epidural was used. He was on his side when he had this epidural and now the doctors say it was manipulation of the spine.

Comment from: SouthernLady, 65-74 Female (Patient) Published: August 18

I had two disc laminectomies prior to my CES in 2013. I went to the ER by ambulance when I was in agonizing back pain and was sent back home after many hours there. The next day I went back by ambulance, still in agonizing back pain. After doing an MRI, my surgery was scheduled for about 60 hours afterward. The fusion at L1-2 was fine, but because of the CES, I was in a rehab hospital for 28 days. Please, if you have CES, stay with exercise - no matter what baby steps you have to take. The pain doesn't matter. My PT said if I didn't exercise every day I would one day find myself in a hospital bed with even more problems than I have now.

Comment from: JustamommyandLPN, 25-34 Female (Patient) Published: May 28

I was diagnosed with 5 fractures in my back my S1 to my L4 about two years ago. After getting to the ER doctors did X-rays which, showed something abnormal, so they did an MRI and then I was in emergency surgery! I had a laminectomy and discectomy! It was successful at first now two months later I'm right back in the same pain. I have lost bladder control. Doctors are telling me that at 30 years old, I’m too young for further surgeries.

Comment from: sandra, 45-54 Female (Patient) Published: February 15

I have been diagnosed with CES and I had a discectomy. I am still suffering with pains in my feet and the back of my heel. I was left for 18 months crawling on my hands and knees to A&E before any MRI scan was set up. The doctors at A&E just kept on telling me to go back to my GP and get referred for a scan. It was only when it was too late did they do something. I ended up with emergency surgery. My GP still won’t listen and my mobility is horrendous. I can’t stand for a longer than a few moments.


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Comment from: shane, 25-34 Male (Patient) Published: September 25

In my early 20s I started having back pain while working on a production line. I went to the same doctor for two years and got nerve blocks.

Comment from: Kiran., 35-44 Female (Patient) Published: July 31

My case of cauda equina syndrome symptoms were treated with emergency surgery to L4/5 where unfortunately I had a ruptured disc.

Comment from: SAD programmer, 45-54 Male (Patient) Published: December 05

I have worked in construction as an electrician and an A/V installation tech all my life. In early 2004 at age 47 I started experiencing pain in my left hip that eventually ran down into my leg and into the bottom of my foot. After many trips to the bone doctor, with him telling me that there was nothing wrong, at his last visit I grabbed his hand and placed it on the small of my back and bent forward and backwards so he could feel my bones pop. He then insisted I have surgery. In late 2004 I went in to have back surgery (Laminectomy w/ rods and pins)L4~L5. I developed Cauda Equina Syndrome from a blood clot at the base of my spine.

Comment from: janice, 55-64 Female (Patient) Published: March 04

I have suffered with back pain for about 10 years. Over the last two years it had got increasingly worse and my bladder and bowls started giving me problems. I wasn’t incontinent and I had trouble going to the toilet. My bottom went numb so I had to have emergency surgery for cauda equine syndrome two weeks ago. It was a success in that it helped the pain in my left leg, saved my bladder and bowl function. I have still been left with terrible pain in my back and left and right hip also tightness in my left leg. In all I was still glad I got the op done as I don’t think I could live with being incontinent.

Comment from: Jim, 75 or over Male (Patient) Published: June 23

After another week there was a progressive lack of time between warning and "going". Finally there was no warning at all and I started wearing "diapers" full time. At present I am either having a short time to get to the bathroom and choose which way to start, or just discovering I had just relieved myself. Today I was told the MRI showed an enlargement suggestive of caudia equina. Up to now my urologist had no really effective treatment and was taking a wait and see approach. This is NOT acceptable. His nurse is in process of offering various ideas. If requested, I will list further updates. Today is June 21, 2011. I was born in November, 1927 and was a veterinarian before retirement.

Comment from: Patti B, 55-64 Female (Patient) Published: February 16

I have been diagnosed with Cauda Equina since Oct. I had open heart surgery and a triple bypass then and I was not able to get the back surgery. Now I have to get cardiology physical therapy to ensure that I will be able to survive any surgery. I am 61 years old and so disappointed. I have no bladder control and my right foot is numb.

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