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Cauda equina syndrome (CES)
2011 I started with pain down my legs I could hardly walk it was so painful. After the MRI didn't come out well at a clinic I went to the hospital suicidal saying I'd rather die than live like that another day. They did MRI and found I had L5S1 slipped disk. They admitted me for pain management and started me on pain meds. I was relived finally I knew what was wrong and had meds to help the pain. Found a pain clinic and my first injection was wonderful took the shooting leg pain away. I tried a couple more with little success then the last on he knick something which caused a large hematoma. So very painful. Swore I'd never do it again. Last nov I turned from the sink heard a pop and instant pain I thought it was like other times where some prednisone would do the trick. It got worse I started loosing feeling below and pee just poured out when I stood. I went right to ER. The surgery they said I could not have because of weight was finally being done. 5 months later I still have tons of nerve type pain and I have a foley cuz I have Cauda equina syndrome (CES).
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Hello, my name is Skip. Sorry to hear about your accident. I've had CES for the last 8 months, hematoma after back surgery compressed the nerves at the nerve root. I've done allot of research and I can't find anything about treatment post surgery. All I can find is about the emergency surgery that must be done within the 48 hour time frame after being diagnosed and what CES is. That's one of the reasons I got on this support group, In hopes to find out what others may no about any treatment. Get back with me, thanks for the response. Skip
Hello, my name is Skip, 61 years old. Got CES from a hematoma after back surgery 8 months ago. I have been steadily getting worse with nerve pain since surgery. I have a long story but I won't get into it at this time. Don't want to bore you, smile. I haven't had CES as long as you but I'm also scared, and no how you feel. Seems like Doctors don't have a clue what to do and friends and family don't understand. I was on a catheter for 6 months. I had an enlarged prostate, due to that and the week bladder from CES, I had prostate surgery. Wasn't any fun but after surgery I was able to urinate on my own and got rid of the catheter. Thank God for that.
I still suffer from all the normal CES problems, balance, have to use a cane, walker of wheelchair depending on how far I have to go. Numbness and pain down my legs, pins and needles in my feet, severe back pain, Rectal nerve pain that is awful. Going to a new Surgeon Monday, I hope he will have some insight on CES. Please get back with me, together we may find some answers. ...Skip
I have had symptoms of CES since I had a burst fracture of L1 over 4 years ago. Wasn't diagnosed until recent. So has anyone had success in decreasing this horrific nerve pain? Seeing 2nd surgeon this month. Haven't had any decompression, or any surgery regarding this. It all may be too late.
I am 38 and new to CES. In July 2018 my back started to hurt. I stepped out onto my front porch heard a pop, drop to my knees and lost all feeling in my right leg. Had my children help me to my bed call the ambulance. When the ambulance arrived they asked me to sit up so I did and I heard another pop screamed from the pain and almost blacked out. Lost all the feeling from the waist down. Arrived at my local hospital where they give me pain medicine told me to go home and call my local provider. I was not satisfied with that so I had a friend drive me 2 hours to another hospital. The hospital gave me an emergency MRI and told me I had to have surgery right away. (I went in to emergency surgery only 3-4 hours after the nerves were compressed). When I woke from surgery I had little feeling in the front of my legs, none in the back of my legs, and my whole saddle area is numb/on fire. I did physical therapy but that cause a lot of pain. I ended up having surgery again Feb 2019. I still have lots of pain and it seems nothing is getting better. I take 100 mg Lyrica 2 times a day and spend 90% of my time in bed. It hurts to walk, sit, or function like a normal person. No one understands.
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2 Reactions@briannan I'm so sorry for your pain and situation I had 2back fractures L2L4 The Dr sent me to the orthopedic Dr for 3months I was in a turtle shell brace my legs where also numb at first and had to lift my hips to turn in bed.Then water therapy that's better for you then on land for 9 months. HAVE YOU SEEN THE ORTHOPEDIC DR? If your PCP isn't helping you see a Orthopedic Dr Your to Young for this I hope you come back and let us know how your doing, connect is a good group and caring group I send you my Welcome Linda
Have you tried a Transcutaneus Electrical Nerve Stimulator ( TENS)out side the body. electrodes above and below back pain and crossed. I used them all the time as a physical Thearpist. Interferential surging type also worked, I know nothing about implants, but this foegotten therapy did give relief..for a while.
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1 ReactionCAUDA EQUINA HAS DESTROYED THE MUSCLES in my legs. I am now wheelchair bound and cannot drive or walk or stand
I am 84. Less than a year ago I was walking, driving my car. In Feb I experienced severe pain, in May I had to use a wheelchair. Many tests, no treatment.
At my last visit to our Pain Clinic I was given the name of the book: THE WAY OUT, by Dr. Alan Gordon. Seems like that is the best they can do. Interestingly, it is a good book.
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1 ReactionA doctor at the Pain Clinic tentatively thought I may have CAUDA EQUINA. My former surgeon and staff at the Spine Clinic went ballistic. They told me that I had never heard the term CAUDA spoken by clinic doctor, in spite of the fact that I had her spelling the term on the back of her business card. This was followed by harangues ascribing all symptoms of CAUDA EQUINA to Neropathy. I have been had.,
How do I get a diagnosis from Mayo Clinic.