Cauda Equina Syndrome


Please describe your experience with cauda equina syndrome. Submit Your Comment

Comment from: abe, 35-44 Male (Patient) Published: August 17

I was diagnosed with cauda equina syndrome (CES) after suffering with severe pain in my back through my legs from both sides. I went to the emergency room (ER) room 4 times before they knew it was CES, but thank goodness, they did the operation fast. And it really worked out good after surgery, numbness goes and comes, but still better than having pain. I think my neurologist did a good job since my pain was relieved and bowel function was back after surgery and the most important was my being able to walk, back on my legs.

Comment from: Sarah , 35-44 Female (Patient) Published: June 04

I had cauda equina syndrome (CES) in 2012, which resulted in an emergency surgery, L5 and L4 were fused. It took some time, however I was fortunate and fully recovered. Now in 2021, I am experiencing severe pain in my left hip, that shoots down my leg to my toes, for the past three weeks. Two days ago my left arm started feeling extreme discomfort. Wondering if it is related to my original CES surgery. I hope that all of you that are suffering medically and emotionally, get well.

Comment from: Lili94, 25-34 Male (Patient) Published: May 12

Around 4 months ago I started feeling sudden genital anesthesia and slight motor loss in my genitals. No pain whatsoever. I immediately went to the doctor to rule out cauda equina syndrome. He did an MRI and CT scan to check my spine and said I don’t have cauda equina. Four months past, my situation is getting worse. My pelvic muscles are imbalanced. My penis just feels numb. I wonder if this be cauda equina still. Maybe the doctor did not notice it. I have mild desiccation in L5-S1.

Comment from: Phil k, 55-64 Male (Patient) Published: October 27

I had my surgery in May. At first recovery went well. A month ago I lost 80 percent of progress. My full legs and abdomen are now in full constant spasm 24 hours daily without even 5 minutes respite in a month, even with baclofen. I have full control of bladder and bowels, but my pain from cauda equina syndrome has me hoping for death and contemplating discontinuing life support medicines like insulin. Space constraints prevent more detail.

Comment from: Amanda, 35-44 Female (Patient) Published: October 27

My experience was horrific. My severe pain was ignored, and I was told I was a hypochondriac. Surgery was delayed for weeks, past the point of damage. A disc had been compressed so long that even repairing it could not reverse the damage. I am re-learning walking, toiletry, and balancing. With cauda equina syndrome I have loss of feeling in broad areas, and can’t feel my anal and front areas. I have no libido, have bowel and bladder issues, big mobility issues, loss of skin integrity and balance and sleep disturbance, but it’s the pain that really ruins my life. Life is pain.

Comment from: reza, 55-64 Male (Patient) Published: June 04

In my opinion, it is better to die than to be unable to urinate and defecate easily because of cauda equina syndrome, after 2 years of back surgery, and to have my whole buttocks with 10 degrees of pain and all 24 hours of pain. So what is the surgeon doing!

Comment from: Ph.d retired xmodel , 65-74 Female (Patient) Published: October 20

I had 4 spinal fusions, and now have all symptoms of cauda equina syndrome (CES), but all tests and the orthopedic surgeon say no. I’ve been to every doctor and 70 percent say I have CES. I don't want to live any more. I have had a wonderful life but need help. I am detoxing and going through agony, losing weight, appetite and the will to live.

Comment from: MikeS, 65-74 Male (Patient) Published: October 19

I have very recently been diagnosed with cauda equina syndrome. I almost lost bladder and bowel function, though a TURP (transurethral resection of the prostate) procedure did restore my urinary function for a while. Only after a series of falls and onset of nerve pain throughout my left leg and pelvis was I finally diagnosed with severe spinal stenosis across almost my entire lumbar spine. I had a major laminectomy surgery six weeks ago. All this, and several hospitalizations, have left me suffering from anxiety and depression.

Comment from: anonymous , 35-44 Female (Patient) Published: August 28

I had my surgery on March 30, 2019 for cauda equina syndrome and I am still having numbness in my buttocks, legs and feet, but what I am really concerned about is the bowel problem I keep having. I went a couple of months not having an accident, then boom, once again. Will I ever gain the ability to hold my bowels again! It makes it so hard to feel secure or go anywhere. I can't go to restaurants and eat. I'm shut in because of my problem. I wonder if anyone else ever regained the ability to hold it in.


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Comment from: Julieanne, 45-54 Female (Patient) Published: March 31

I had bilateral sciatica and right foot weakness in my right foot for 4 weeks in 2018. On 21/12 I could not stand and was fully incontinent because of cauda equina syndrome. I was rushed to Accident and Emergency where an MRI showed a large arachnoid cyst at L3/L4. I had emergency surgery to remove the cyst. I am now incontinent and on a strict bowel regime. I am in pain 24/7; deep back pain and right leg screaming nerve pain. My movement is limited. My life is on hold. It's a living agony. I've considered suicide. I live for my children.

Comment from: Nancy in MN, 65-74 Female (Patient) Published: March 03

I am truly one of the lucky ones. I went to the emergency room when over the course of a day I became unable to stand or walk. MRI and blood tests showed MSSA (methicillin-susceptible Staphylococcus aureus) staph had infected L5-S1 disc. Took two surgeries to clean that out and a third, a week later, to fuse S1-L5. Ended up with cauda equina syndrome (CES) but was extremely fortunate. I have classic saddle numbness, but everything from my pubic area to my foot only affects the left thigh and foot. Bladder function was back 100 percent after the catheter was removed three weeks following surgery.

Comment from: Earth_angel, 35-44 Female (Patient) Published: February 25

I was first diagnosed with cauda equina syndrome when I was 26, after my second pregnancy. I used steroids and injections to bring down inflammation on the nerves, but it was not successful, and it worsened. I was paralyzed for 2 months and needed to be catheterized. Then I found a neurosurgeon who did a microdiscectomy on the L5-S1 disc within 2 weeks. For 10 years I was okay until 2016 and the same thing happened all over again on my L4-L5. Now I still have neuropathy, saddle and bladder problems.

Comment from: Calvin, 35-44 Male (Patient) Published: February 19

Yes, I was diagnosed with cauda equina syndrome in 2017. I've had it since 2016 but I was misdiagnosed and was never treated. I have numbness in both legs, feet and anal area. I can’t sit for long, feels like I am sitting on something and it drives me crazy. I was put on prednisone and it helped me before, then I was paralyzed waist down. In 2019 I started to learn how to walk again, and I still have numbness, but my leg strength came back.

Comment from: ChangedMYlife35, 35-44 Female (Patient) Published: January 15

In April 2019 I went to a clinic and I had two back surgeries in five days. It had hurt for 8 months prior. March 2019 pain got worse. April I went in for surgery. The doctor told me I have recovery of 2 days for driving and normal life. I came out of surgery feeling ok. Could walk again. Went home for recovery, but it took a turn for the worse. I called the doctor with urinating and bowel issues; I was numb. Doctor said I was normal. Four days go by, I made an emergency room visit and had MRI. I had a 2nd surgery for cauda equina syndrome. Now I have permanent pain.

Comment from: O McAlindon, 19-24 Male (Patient) Published: November 14

I have had all the symptoms of cauda equina syndrome (CES) and have had 3 MRIs with nothing showing. Wonder if anyone has come across this before, and if so the tests or treatments they went through to either resolve or get a diagnosis. This has been going on for 3 months now and I only seem to be getting worse.

Comment from: Lynne , 45-54 Female (Patient) Published: October 30

Finally after 12 days of being bedridden due to the excruciating pain, my husband drove me to hospital and they weren't going to admit me but did. I had an MRI after 2 days and was diagnosed with cauda equina compression. Two discs were removed and I was home yesterday but have been told I may need further surgery in the future. Worried about this.

Comment from: Kelly S., 19-24 Female (Patient) Published: October 08

My herniated disc ruptured compressing my spinal cord and nerves, resulting in cauda equina syndrome. After surgery all hip and sciatic pain were gone but I was unable to walk, have saddle anesthesia, was constipated for over 3 weeks, and unable to urinate on my own. One month now after surgery I can walk again with a cane, I can use the bathroom on my own but with much difficulty, no sexual function, saddle anesthesia, numbness in feet and both legs, no muscle tone or strength. I am thankful I can walk at all.

Comment from: Ray, 45-54 Male (Patient) Published: August 27

I had emergency surgery back in April of 2014 after years of back pain. I had a laminectomy on L1, 2, 3, 4 and L5. I was diagnosed with spinal stenosis and had 3 blown discs and 2 severely bulging. After my surgery I was diagnosed with cauda equina syndrome as I had no feeling in either of my legs below my knees. I also suffered from saddle numbness, couldn't urinate on my own, defecate, and had no sexual function. I now walk but have drop foot and can urinate and defecate with difficulty. I still have leg neuropathy.

Comment from: Anixa, 19-24 Female (Patient) Published: August 16

I just want to share all with you the results after my surgery (laminectomy) for cauda equina syndrome. I can say that it was all worth the price and sacrifice. Before I underwent the surgery, it was all about pain and surrender. I couldn’t walk, catheterized, couldn’t pass my stool, and the worst was the pain that ran through my legs down to my feet. But then after I had my surgery, only a few weeks passed by and I can really say I have recovered from the nightmare I had. I can walk by myself, urinate, can pass stools and no more pain.

Comment from: Clare, 45-54 Female (Patient) Published: August 02

Cauda equina syndrome started on 31st may 2019 for me, I could not walk and my body went into shock. I called the doctor who gave me more pain killers. I asked for an MRI scan she told me it probably would show up if there is anything. I had been treated for sciatica until it all kicked off. By the evening I could not urinate. I rang for an ambulance got to Accident and Emergency and had an MRI scan. Half an hour later I was about to have emergency surgery. Eight weeks later I have a catheter and no control of my bowels, and my leg and saddle are numb.

Comment from: Eugene , 25-34 Male (Patient) Published: July 23

Basically I was misdiagnosed but got help within the 48 hour window. My cauda equina syndrome started out with back pain for 2.5 weeks then I woke up one morning barely able to walk. It got worse during the 48 hours that followed. I ended up numb in the saddle region, along with numbness in groin and both legs down. I have pins and needle sensation in both feet. I had surgery on my L3/L4. I do have some bladder and bowel control but I have to push to urinate and my rectum area is numb. I am currently in rehabilitation to learn to walk again.

Comment from: Marie, 55-64 Female (Patient) Published: July 12

I was diagnosed with arachnoiditis 2 years ago. I had never even heard of it before having my MRI read that day. Anyway, the pain is increasing in my back and legs, have numbness in feet and buttocks, along with a burning sensation, and I had one instance, this past Sunday, where I lost control of my bowels, but it was a onetime deal. I have been having to wear Poise pads, first for minor leaking but now for major wetness daily. I wonder if there is anything a doctor can do for my cauda equina syndrome or if I have to just deal with these symptoms!

Comment from: 1cbrigg, 55-64 Female (Patient) Published: June 19

I've had 13 back surgeries, I broke the fusion into pieces. Past month or so, my buttock checks and inside of my legs go numb. So far I haven't lost bowels or bladder function from cauda equina syndrome. I'm just wondering if it will get worse.

Comment from: Maggie01, 65-74 Female (Patient) Published: May 14

Whenever I get up from bed I have uncontrollable urine loss because of cauda equina syndrome, and my left leg feels like it locks. Before I can walk I have to 'unlock' it with great pain and then I am able to walk.

Comment from: Babydoll8838, 25-34 Female (Patient) Published: April 23

On 10/12/16 I had my L5-S1 disc cleaned out from rupture. I woke up with no feeling in my pelvic area, bottom, back of legs, down the left side of my left leg, and no control over bladder. After MRI I was diagnosed with cauda equina syndrome (CES). My surgery caused CES! I still suffer horrific pain, still numb, and have sexual dysfunction. I struggle walking, and have bowel and bladder issues, etc. I'm getting worse. The hospital just made my neurologist stop treating me and cut off all my pain medicines last week because it is out of his realm to treat pain (um, why) and they disagreed with the dose! I need help, suffering!

Comment from: BMD57, 55-64 Male (Patient) Published: April 17

In March of 1986 while on duty as a firefighter/paramedic I had a traumatic acute cauda equina emergency. It was devastating to me, I lost bladder, bowel and sexual function along with paralysis. After 5 surgeries and extensive therapy I can walk in a full leg brace, and void on my own. Problem is I have excruciating leg pain again and blown disc now. Seeing the best medical help and eliminating options prior unknown. Stay strong and believe all will be fine. I was 29 when injured and today 62.

Comment from: Tony, 55-64 Male (Patient) Published: December 11

I had emergency surgery in September of 2015 for bulging disc which had the nerves compressed. After surgery the pain was gone but I developed cauda equina syndrome. I couldn't urinate on my own or pass motion without stimulation. I couldn't feel anything below waist and sexual function is gone. Doctor said he didn't know if or when anything would come back. I couldn't walk, three years later I can urinate and pass stools if I take laxatives, and I can walk but my feet stay numb. I have foot drop, no balance at all, still have saddle anesthesia, and no sexual function.

Comment from: Bex2018, 25-34 Female (Patient) Published: October 09

I had cauda equina syndrome 11 months ago. I had it for about 5 weeks before they would let me have a MRI scan saying that it was just a bad back. Prior to the operation I lost bladder and bowel function and could hardly walk, 11 months on, I can now walk again but still have no bladder or bowel function. I still get back and leg spasms but have definitely come a long way. There are still days when it gets to me but I just think how lucky I am that I can hold my son's hand again walking down the street.

Comment from: Fred, 45-54 Male (Patient) Published: September 28

I think my cauda equina syndrome has come back as I'm barely able to move, and it is the same as it was prior to my operation back in 2010. I wonder if it is possible for it to recur.

Comment from: A24faith , 35-44 Female (Patient) Published: June 26

On June 10, 2017 I had an accident which resulted in cauda equina syndrome. It takes away all the feelings and your legs and gives you the inability to control your bowels, and no sexual feeling of any kind. But the worst part of all is that it leaves you an acute chronic pain because of all the nerve damage, there is nothing but nonstop pain 24/7. The first surgery on October 30 did not work so then they had to do another surgery on February 20 where they filled my back up with metal. I was still in an incredible amount of pain and I kept bothering my doctor till he finally did another MRI and found out I need a third surgery. I’m afraid to have another surgery done because like many doctors have told me, every time a doctor performs something on me they make the situation worse and limit any alternatives I have for trying to heal myself. But I still need his third surgery so that my nerve can finally stop being pinched. The pinching nerves causes me to not have any control of my bowels I have to catheterize myself four times a day, I have to clean out my anal cavity with a gloved finger which hurts incredibly badly. I cannot sit for more than two hours. I got fired because I was out of work too much and my medical bills are outrages. I’m 37 years old and for the rest of my life I will have to catheterize myself and I will have no feeling and either of my legs.

Comment from: Clancaster44, 55-64 Female (Patient) Published: May 24

I had a trial spine stimulator with 4 leads put tin my lower back. The very next day I had all symptom of cauda equina syndrome. My doctor never mentioned this to me. Coming out of surgery he told me and my daughter that he had made a couple of mistakes. He poked a hole in my thecal sac, so I had spinal fluid leaking causing terrible problems. Also said he touched the bottom of my spine with the needle (I believe he said this name conus medullaris). I have no bowel control, I am numb on the left side of my body, pelvic area around to the buttocks. After a while the numbness started down the back of my left leg. I have been to a neurologist and he referred me to surgeon, who looked at MRIs and said he sees no damage hence nothing he can do for me. Maybe the 1st doctor missed the 48 hour window (it's been 6 months) and they can't see where damage was done, maybe it's healed on my spine. I don’t know if there would be a sign of past trauma. I have no idea where I go from here, this is ruining my life!

Comment from: CESurvivor, 65-74 Female (Patient) Published: January 18

I had a disc 'blow up' in November 1994. Due to physician incompetence and surgery done more than 48 hours after initially visiting ER, I have lived with neurogenic bladder/bowel since. I'm doing quite well, all things considered. I have not had to catheterize since about 6 months after surgery (with still very little control), but have dealt with the bowel problems from cauda equina syndrome ever since. And yes, I've been through agony with the pain/bladder/bowel. I rarely use a walker/cane anymore, but I do know my limits as far as walking goes. Just a few suggestions for all of you for dealing with the pain which is indescribably bad. Forget the pain medications! I think I've tried just about all of them. After dealing with the horror for about 5 years, I was finally prescribed Neurontin (generic is gabapentin). This relieved about 85 percent of the pain symptoms. I was taking 4800 mg/day for about 4 to 5 years. However, fair warning, terrible side effects. I won't go into all the horrible side effects, but what concerned me most was when I started noticing my vision was 'cloudy' and I was having to re-read everything several times in order to grasp what I was reading. I was scared to death to stop taking the medicine, but weaned myself off the medication. A couple of days or so after completely stopping, I felt like I had come out of a fog of anger and the pain didn't return. (My daughter also told me that I had at times made the most bizarre statements which I didn't remember.) So, this medication can work at high dosages, but be aware of adverse reactions! Also, about the pain, I still had that awful, constant aching pain in my legs. I found, on the internet, Shilajit, a natural supplement. About a week after beginning to take it, I was driving in the car one day and suddenly realized that ache in my legs was gone! This was 16 years after initial nerve damage! I stopped taking it after about 2 or 3 years and pain is still gone (almost always although I have noticed cold weather brings a tinge of it back occasionally). Really, the only pain I have left is intermittent feeling of 'burning from the inside out' in the pelvic region which can usually be stopped by applying pressure and feeling of 'labor pains' in my rectum which takes my breath away, but usually doesn't last too long. Occurs in the mornings and after eating. As to bowel problems there's a machine called the PIE: pulsed irrigation evacuation. It's a life saver! I hope all this helps for any of you. As I said, I've been living with this for more than 20 years and am doing remarkably well.

Comment from: srouse, 25-34 Female (Patient) Published: September 29

I was healthy, felt great, and on a Sunday went to bed as usual. I woke up at 5 am with extreme shooting pain down my left leg. I got out of bed and went into the living room and sat in the recliner. I fell asleep and woke up at 7 am with left leg numb, almost like it was asleep, and shooting pain down right leg. I went to the emergency room (ER) and they diagnosed me with sciatica pain, pumped me full of morphine, and sent me home. The next morning I woke up with no feeling and no control of bowel and bladder. I went back to the ER they sent me to the hospital where I had an MRI and was diagnosed with cauda equina syndrome with 2 bulging discs. Now 2 weeks later I still have saddle anesthesia, and numbness in both legs.

Comment from: michael, 25-34 (Patient) Published: October 20

I got cauda equina syndrome (CES) from medical negligence. I went to the emergency room and my doctor with back pain and was turned away. I lost everything, my bladder included. I live in pain day and night. I can walk but wear braces. I take lots of pain medicine and have lost most of my sexual function. I have to catheterize in order to urinate at all. I must reach up and pull feces out of my bottom because I cannot push it out. My legs are freezing all the time. I fight for medication and help from doctors. I live pain pill to pain pill hoping to get better someday, maybe with stem cells. CES is terrible stuff, the kind of thing that will test your whole soul, body, and mind. Hold tight to your mind and seek pain help!

Comment from: Cangel, 55-64 Female (Patient) Published: June 05

I had a vehicle accident feb 5, 2013. Almost immediately I started having pain in my right hip & leg. I went to the ER the next day. They said everything was fine and probably had pulled a muscle. They gave me pain pills. Well I still was hurting, after a couple weeks so I went to my doctor, they gave me a steroid shot in my hip, that seemed to help some. Then one morning I woke up and had an horrible pain going down my leg, went to ER. They gave me a shot an pain pills. The next day I could not walk on right foot it was cold and numb. Went to my Dr. and got another steroid shot. Next day my left foot did the same thing, then I lost my bladder and bowel, went to another ER they took me right in, did a MRI, within minutes a surgeon came and said he had to do emergency surgery. He told me that I may never walk again, I had CES at the L4/5. It's been 21/2 months. I have no feeling in my legs and my hips and I'm having therapy and I have had some results in my left foot. I still have problems with bladder and bowel. The surgeon told me that this could have been prevented if an MRI had been done before I lost everything. I have drop foot from this and if anyone has this as a result of CES, please let me know.

Comment from: Rick, 65-74 Male (Patient) Published: November 12

My symptoms are all consistent with cauda equina syndrome (CES)... except sudden onset over a period of days. I also experienced severe pain on increased intraabdominal pressure (cough, sneeze), but slightly relieved with support. Resolution was spontaneous in two to three weeks. Had heat therapy. I got some relief with OTC analgesics (500 mg acetaminophen) PRN. Very intense radiating pain; viral origin perhaps.

Comment from: ldryder, 55-64 Female (Patient) Published: June 10

I have just noticed this article of Cauda Equina Syndrome, and to my surprise that was most of my symptoms. I have endured 3 surgeries on my lower back. The Last one a Dr. put 2 rods on both sides of my spine, and since that was done all has gone downhill. Both my legs are not trustworthy to walk even in the grocery store for fear of falling, I never know when my legs will go out on me and I will fall. The pain is always with me. A pain management Dr. inserted a pain pump that I have to have filled every 3 weeks. So now I am addicted to the drug Morphine, and that has become just another problem for me, because do I not only have the pain, but if I go a day or so longer without the Morphine, that adds to the pain I already have. “People PLEASE listen to this if anything else, once you are addicted to the Morphine; it’s a living hell to get away from it. PLEASE if it's offered to you please read everything you can about it! Especially the part about getting off the pump. I was never offered that information. Nor was I told it would become addicted to the med. ( I am ignorant to Meds. and what an impact they have on your life.)

Comment from: Jorita, 35-44 Female (Patient) Published: June 26

I have cauda equina syndrome for 3 years now, I don’t have any medical aid and I am a single mother with two 15 year old boys.

Comment from: jaymz37, 35-44 Male (Patient) Published: April 26

I am active duty army. I had a cyst in my L-4 flare up to the size of a golf ball. I was not allowed to go to the health clinic until after work. I was transferred to the ER, but was forced to wait two hours before being seen. The only thing the doctor did was stick his finger up you know where. Now I'm facing a discharge for a conversion disorder instead of CES. We'll see where I go from here.

Comment from: anon UK, 65-74 Male (Caregiver) Published: April 01

My partner was unaware he was suffering from CES until he suffered pain and weakness in his legs in the weeks following an RTA which he walked away from. Subsequently, he woke one morning paralyzed from the waist down and with both urinary and bowel incontinence. Despite an emergency operation his condition has not improved four years on, totally devastating his life and family life.

Comment from: Mother of 4, 25-34 Female (Patient) Published: March 27

I have had CES for 6 years now after a sledding accident caused an L1 burst fracture and the ER misdiagnosed me. This is an awful thing everyone but I also want you to know this. Life is livable. I was a 27-year-old mother of two at the time it happened. I was paralyzed and lost feeling from my waist down. Amazingly I was able to learn to walk again. I learned how to self cath and manage my bowels. I've even had two more very healthy beautiful babies. I get lots of UTIs and my meds often make me sleepy. I have horrible pain in my feet when I wear shoes so even in snow I often opt for sandals. I try to be aware of frost bite and always keep closed toed shoes handy. I go camping and am a leader with both Cub Scouts and Girl Scouts. I try really hard not to embarrass my children who are 10, 8, 2, and 8 months but there have been times when something horrendous happens. I once had diarrhea in the middle of the grocery store and since I have no feeling I had no idea until I smelled something awful and saw the trail leading to me

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.

Comment from: PainIsGone, 35-44 Female (Patient) Published: October 18

I had all these symptoms. It started with a stiff lower back about 3 years ago, and it slowly got worse. I did too much camping, backpacking, and heavy lifting, and I tried to keep up with my teen boys. Three months ago, it started to hurt daily. I had chiropractic adjustments that helped at first. I also used ice and stretching exercises. Then, one day, everything I had been doing stopped working. The Doctor gave me anti-inflammatory, muscle relaxants, and Vicodin. A week later, everything got MUCH worse again. I was almost paralyzed with pain. Then my legs started to go numb, and I lost control of my bladder. I had an MRI, and a neuro-surgeon did emergency surgery. Three weeks later, I feel MUCH better. I will have to be careful for several months so I won't re-injure myself. I also had to get a new mattress. Fortunately, I am beginning to get the feeling back in my legs and feet, and I have better bladder control than I've had in several years! This seems like it must have been building up for a long time. I will be very careful to make sure it does not happen again, and I will warn my boys to use a lumbar support belt when lifting heavy objects. Thanks to all the doctors and nurses who took such good care of me at the hospital! :)

Comment from: mhm, 55-64 Female (Patient) Published: October 05

Excellent article gave me much needed information. I have all the symptoms and my doctor was very thorough and quickly followed through with an MRI and referral to a neuro-surgeon (six months wait). I was told part of a ruptured disk is lodged in my spinal canal and I have 2nd disk which is herniated/bulging and touching the spinal canal. I was told I could be patient and wait 6 - 8 months and my body would/could absorb the disk in the spinal canal and the 2nd disc should correct itself. If this doesn't happen then the next option would be injecting the discs with cortisone and if my pain still persisted then surgery to removal of the disk particle in my spinal canal. As no mention was made in this article - I am going for a second opinion. I can function with pain meds which I have been assured by my doctor and pharmacist are not addictive.

Comment from: worriedmom, 13-18 Male (Caregiver) Published: July 26

My 13 yr old son has been diagnosed with cauda equina syndrome after suffering a herniated disc at L4-L5 from a recent weight lifting injury at school. It's rare and it is horrible. He saw a chiropractor first, had adjustments and muscle stimulation along with major icing for ten days or so. He walked like a penguin. No muscle strength in feet. He got an MRI done and things moved quickly after that. He had surgery today and we're praying he will heal and walk normal again.

Comment from: Femaks, 45-54 Male (Patient) Published: July 15

In 2005 I was diagnosed with cauda equina syndrome CES, six weeks later iI had a surgery done. I noticed before the diagnosis I lost my muscle tone on both legs, with associated numbness in the groin, penis, both legs and around my anus. I lost my erectile function, also there were difficulties to pass urine and I was constipated. But what I noticed is that six years after surgery I have not completely recovered from this symptoms; worst of it, is whenever I have sex with my wife I do not ejaculate, i don't reach orgasm. This bothers me a lot. I had MRI done recently, they're not very sure if it is fibrous tissues or herniation between L5 & S1. There is still pain on the left leg, tightness around my perineal region, with severe burning sensation. It is great discomfort for me.

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