I Have Cauda Equina Syndrome

Cauda Equina Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Cauda Equina Syndrome. You're not alone. 140 People

    Does Live Go On

    I have had two prolapsed sisc one in march 2010 which left me with left side numbness back of leg ankle and foot numbness of the buttocks  i had bladder/bowel/sex dysfunction and a neuropathic bladder so l have to catheterise 4-5 times a day. Then in Jan 2011 i had anoher...
    karenepriest karenepriest
    1 Response Jan 10, 2012

    Hello My name is Tom,

    I have Ces for over past 3 1/2 yrs . It is very frustrating and stressful trying to cope with this plus chorn's Asthma. High Blood press. to name a few, But when this Ces happened few years back it put all other medical condition on back burner. I like to know are there new med...
    makemelaugh101 makemelaugh101
    4 Responses Mar 12, 2014

    Limping On To Kiss The Light At The End Of The Tunnel!!

    I have suffered with CES since December 2006. It was a work related accident..I was 29yrs old at the time. I had a disc prolapse at L5/S1..sadly it was misdiagnosed..and so I have been left with partial paralysis of my left side..foot drop..numbness..bowel & bladder damage ( I...
    Jaimie661 Jaimie661
    3 Responses Apr 22, 2011

    hello need urgent help on cauda equina i have

    l4 l5 disc central disc protusion from last two years but recently i have a lot of tingling in my testicle area and from last two days i have devolped a problem of frequent urination although i can pass urine normally without pain but i again need to go to the washroom to void...
    karansapra karansapra
    31-35, M
    2 Responses Oct 8, 2014

    How My Life Changed

    I have CES, I will make it short and sweet..lol.. if there is any sweetness to this syndrome... I had lower back surgery in Nov '09 and I woke up to find out I was afflicted with CES... My life today has been turned upside down and I really feel depressed.... There are good days...
    ronquin ronquin
    36-40, F
    7 Responses Jan 21, 2010

    How My Life Changed In One Moment.

    Iam 26 year old male that has been suffering from ces for 8 months. I am one of the lucky ones I don't have bladder and bowl problems, and I use a walker and wheel chair to get around. I wear braces because of foot drop on both feet. I find myself thinking about the past a lot...
    08rrcast 08rrcast
    4 Responses Jan 18, 2012

    A Miracle..

    I was just diagnosed with CES secondary to spinal cord AV Fistula 2 months ago. I was supposed to be Embolized last Tuesday but after another MRI & angiogram check, a miracle happened. My body had healed itself (spontaneous thrombosis). I noticed some improvements since I got ot...
    qayum qayum
    41-45, M
    1 Response Jan 24, 2013

    Just A Girl

    Hi, I am 20 soon to be 21 years old. I have been living with CES for the past 9 months. After two surgeries I am now out of my wheelchair and using a cane. It's really depressing at times knowing everywhere you go people stare and ask questions and all I want to do is hide in a...
    EllaBella7 EllaBella7
    22-25, F
    7 Responses Apr 17, 2013

    I'm Worried My Doctors Might Diagnose CES-1 (Partial) Too Late

    In Sept 2011 I injured my back lifting a box at work. By the end of the night I couldn't stand up straight. All my pain was in my back at this time. The pain was so bad I had my husband take me to the ER which did only an X-ray and told me I had a back strain to see my pcp in a...
    julzml1976 julzml1976
    31-35, F
    3 Responses Sep 11, 2013

    Not Just A Wimp Like The Doctors Treated Me

    Neglect of back problems, overseen by multiple Doctors that ended up with emergency surgery on March 23 rd , 2013. Here’s my story. I’m a 31 year old female, slim, non smoker, healthy, in youth was competitive with dance and dabbled in gymnastics, swimming and other sports...
    altolove altolove
    36-40, F
    2 Responses Apr 18, 2013

    Leaving The Hell

    I wrote my first story on January, just after my spinal decompression surgery for a 3 months of not diagnosed slow onset of CES or CES-I On January and February (first two months after surgery) I lived the worst days of my life. I was in excruciating pain, on mi feet, to walking...
    Pakechi Pakechi
    26-30, M
    2 Responses May 25, 2013

    Is This Normal After CES

    Hi I am jacqueline im 29 I've had really bad back problems for the past 4 years in September 2013 I new something was different when I started having toilet trouble and was in pain no matter what position I was in sitting standing living after 2 weeks of agony I could not walk I...
    Jacquelinenew Jacquelinenew
    31-35, F
    4 Responses Oct 27, 2013

    I just had surgery 6 weeks ago

    after 3 weeks of deterioration in lower body function, basically flat out on the floor in the worst pain I have ever experienced, operating went well but have only just really started looking into my condition. im seeing my specialist for the 1st time tomorrow since the op.
    deleted deleted
    2 Responses Aug 5, 2015

    Partial Cauda Equina Syndrome?

    I've been scouring the net for a similar story as mine, but none seem to fit. I thought perhaps maybe someone out there may have an answer. I've always been an avid weight lifter. About 3 years ago, I injured my back doing dead lifts, and have lived with pain since then. I...
    Voidedlives Voidedlives
    36-40, M
    5 Responses Jan 30, 2013

    Still In Shock!

    I slipped on ice in January 2010 and ended up with two mildly prolapsed discs.I've been on several different medications, had physiotherapy and trigger point injections and had too many doctors appointments to mention.Everything started to get much worse since June this year and...
    WhitbyLass WhitbyLass
    31-35, F
    3 Responses Sep 30, 2011

    Ces Began In 1996 With Spinal Cord Cysts Removal Improved But Now Bladder, Hips ,bruises

    Well, they waited 9 years after my legs collapsed under me until removing 5 inches of tailbone and vertebrae, 2 large cysts, before removal I acquired a burning icy hot pain with pins and needles in lower legs, numbness, weakness during first 6 years. This severely affected my...
    goldenthyger13 goldenthyger13
    46-50, F
    1 Response Jan 20, 2013

    HI , Im 24 years old ,

    im a man . the thing about me is i am not quite sure if i have cauda Equina , i didnt have an accident or any truama , my pain first started at my right foot , a kind of pins and needles sensations ,, until most recently i began to feel it in my lower back , then i thought maybe...
    Atrilundy Atrilundy
    26-30, M
    Apr 19, 2014

    40, Australian, Waiting For More Surgery

    Hi. I am Vanessa, a 40 year old mother of 2 sons. In 2009, I had my first diagnosis of herniated discs. I had my first ambulance trip, when my back went into complete spasm and I couldn't move. I vowed to lose the weight that had crept on. I went on to lose nearly 30kg. It was...
    neonchick73 neonchick73
    41-45, F
    5 Responses Nov 13, 2013

    Angel On My Shoulder

    I had lived with moderate lower back pain for the past 10 years. Started about 9 months after my first child was born. I've always been physically active and in good shape, but never did overly strenuous exercise or suffered any type of injury. My husband and I were at the...
    Positivity19 Positivity19
    46-50, F
    1 Response Apr 23, 2013

    I Have Cauda Equina Syndrome

    My Pain started innocently enough. No huge accident, or fall. Just a regular day 2 1/2 years ago. A small Pain in my right thigh that was like a annoying buzzing. I felt like I had been shocked and everything was still humming. Over 2 Years I told my Doctor about the Pain about 8...
    CES29 CES29
    6 Responses Apr 15, 2011

    My Life Now.

    hi,i'm joanne,i'm 43,i have been married for 8 months now,i had an emergency mri scan n found i had a prolapsed disc,which caused cauda equina syndrome.I had never heard of it.It was 6 weeks ago and i am doing well but i am left numb in my groin.I find it hard to talk about...
    joberrisford joberrisford
    2 Responses Mar 8, 2011

    Hoping For A Good Outcome...

    I am 32 years old and I developed CES during a disc herniation. I had surgery within 48 hours. I thought after surgery everything would go back to normal. So far its been a month after surgery and I still have CES. Lately I've been getting painful electrical shocks in those...
    livingforhope livingforhope
    36-40, F
    2 Responses Oct 3, 2013

    My Slow Onset Of A Nightmare Ces

    Hi there I'm a 28 guy that 3 months ago began a nightmare that I pray for some day it'll finish. I'd never had a backache, used to do exercise often, since I was 11, no smoke, no alcohol, no drugs. One day I was at gym at a pillates ball, making some abs workout and after that I...
    Pakechi Pakechi
    26-30, M
    1 Response Jan 14, 2013

    I Was Recently Diagnosed With Cauda Equina Syndrome

    I had been having back pain on and off for about three years when I noticed it was getting more severe and harder to alleviate.  My doctor referred me to a chiropractor for adjustment and massage several times over the years, and when there was success initially he diagnosed...
    auntielizdaycare auntielizdaycare
    1 Response Jun 15, 2011

    My Life And Cauda Equina Syndrome

    Hello everyone. I came across this website a few days ago, and I finally decided to join so that I can get in touch with others who also have CES. I'm a 37 year old male, living in NJ and I've had CES since May 20th 2013 and I had my emergency surgery on May 21st 2013. Right...
    davender davender
    41-45, M
    2 Responses Sep 12, 2013

    I Am Still Suffering Because Of The Hospital Failing To Diagnose.

    I am a 36 year old mother of two. About 18 months ago, I woke in terrible pain after coughing. I instructed my children to get themselves ready for school and then phoned a friend to ask her to take them to school. I then called an ambulance, something I have never done as I...
    BrisbaneGirl BrisbaneGirl
    41-45, F
    4 Responses Apr 20, 2013

    Lost My Purpose With Ces

    Hi Everyone,I am a 40 year old woman that was injured at work in November of 2011. I was diagnosed with a sprain/strain in the lumbar area. The Dr. and the chiropractor advised me to return to my regular duties as normal activity would reduce the back pain and strengthen the...
    kimboslice40 kimboslice40
    3 Responses Aug 14, 2012

    my name is Ciara and I'm 19

    and I am currently in the hospital post laminectomy. I have had back pain for about a year now. I had an inflamed SI joint that I recieved 3 steroid injections for over a period about 4 months. I got my last one in December of 2014 and haven't experienced any SI pain since! New...
    cjacobs34 cjacobs34
    22-25, F
    2 Responses Jan 30, 2015

    My Cauda Equina Syndrome Could Of Been Avoided!!! Does Anyone Have A Good Dr They Could Recommend?

    I had surgery for torn disk. (discectomy), immediatly after surgery (day 3) I had bowel, urine, and no feeling in my saddle area. The Doctor kept telling me it was due to narcodic pain meds, or possibly a breach baby i had 26 years ago! He and his "dr." friends refuse the...
    kathy777 kathy777
    51-55, F
    2 Responses May 8, 2012

    Emergancy Surgery

    Hi I'm 32 and was rushed in to surgery after a routine appointment that I pushed for because I was in so much pain with my back and legs, I had informed my GP of the symptoms burning thighs only been able to stand for 10-15 minutes no power in leg loss of sensation constipation...
    alicia2002 alicia2002
    2 Responses Feb 15, 2013

    Hello fellow CES survivors my heart is out to

    you all I had surgery on March 4 2015 laminectomy/discectomy emergency decompression was paralyzed for 30 hours .This syndrome is one of toughest things we will ever go through knock on wood I'm at 10 weeks post op now first week I was in a wheel chair and on catheters and...
    clint03 clint03
    36-40, M
    2 Responses May 23, 2015

    Greetings, In August of 2015,

    I had two back surgeries for and resulting in cauda equina syndrome. My main area of concern at this point is bowel control. Constipation or feeling constipated has resulted in what I have self diagnosed as rectal prolapse. Is this something others of you have experienced...
    LindaLouise47 LindaLouise47
    66-70, F
    1 Response Nov 1, 2015

    Having To Live With Cauda Equina Syndrome

    I am in my mid thirties and because of a mistake of someone else, I have to live the rest of my life walking with a cane and having to wear diapers all the time. I have what is called cauda equina syndrome and it is because of an accident at work where another worker wasn't...
    michaelchad74 michaelchad74
    13 Responses Feb 3, 2011

    I Have Cauda Equina Syndrome

    Hi I am a 36 year old woman with two sons and my life was turned upside down in Sep 09 when after emergency surgery, I was given the news that I had CES. I had no idea what this meant, therefore, I was optimistic about my recovery. 6 months on I now fully appreciate the...
    ethan260301 ethan260301
    31-35, F
    12 Responses Mar 23, 2010

    Hi, I'm 21. I slipped a disc in December 2014.

    I had CES symptoms for 2 weeks before having my disc removed as I was on a cruise ship. I guess I'm lucky as I can walk normally with a slight weakness in my left leg and I don't have any pain whatsoever. I'm self cathing but around once a week I start to go to the toilet by...
    sdavis313 sdavis313
    22-25, F
    2 Responses Feb 15, 2015

    Wow I dont know where to start.

    ... after having being misdiagnosed on 12/27/2012 and sent home when i arrived because i was in so much pain i could not walk. Returned to the ER on 12/31/12 to only be told I need emergency surgery as I most likely have Cauda Equina and if something wasn't done asap I may never...
    momndom momndom
    36-40, F
    4 Responses Mar 22, 2014

    I Am Living With My Nightmare Late Diagnosis For Cauda Equina Syndrome

    Hello to all users of this site! I am a 42 year old male who has undergone surgery for full blown CES just four weeks ago, after the NHS Accident and Emergency Hospital failed to diagnose slow onset CES some 8 months ago, when my chiropractor referred me after picking up red flag...
    Hedgehog43 Hedgehog43
    41-45, M
    5 Responses Feb 9, 2013

    Cauda Equina Syndrome In Houston Tx

    I had to have a benign tumor removed from my spine in July 2011 and it left me with Cauda Equina Syndrome. I have come from having my surgeon tell me he didn't understand why I was not paralyzed, to being on a walker from July to December, physical therapy mostly 3/days/wk, use...
    rlcoultas rlcoultas
    3 Responses Dec 17, 2012

    I am a 28 year old mother of two young children

    and a wife. In February of this year 2014 I was rushed into surgery do to CES. The surgery took care of the back and right leg pain along with the bowel incontinence. About a month and a half after surgery I began to have weakness in the left leg and was having trouble...
    korinne44 korinne44
    31-35, F
    2 Responses Sep 17, 2014

    Cauda Equina Syndrome - What's That?????

    hi, I've had CES for just over a year now - I had suffered with sciatica on and off for several years, but for the few months before 'it all kicked off' the sciatica had been getting more frequent and longer lasting. Finally my GP referred me for physio, and I had accupunture...
    alib1 alib1
    1 Response Aug 17, 2011

    Taking Ces A Day At A Time

    tinc83 tinc83
    26-30, F
    4 Responses Nov 8, 2012


    Have just been diagnosed with CES. Dr. says surgery in a week. Have had no back pain which, to me, would indicate such a severe condition. Am confused, bewildered, scared...are there no alternative treatments for CES? They wanna cut me open and put rods in my back! My God...
    ofallthings13 ofallthings13
    61-65, F
    1 Response Sep 25, 2013
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