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Cauda Equina Syndrome - Experience

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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: 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: 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.


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Cauda Equina Syndrome - Symptoms

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