Cauda Equina Syndrome

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My name is Rose and I suffer from Cauda Equina Syndrome , I have been neglected by my hospital and delayed surgery and diagnoses led me to suffer this condition. I m in process of prosecution and like to find out a few things from other pations who suffer from this :

1) had anyone had back problems before suffering from Cauda and do they experience more back pain since they suffered cauda?

2) did anyone had to have a disc decompression? Or fusion - if so did the fusion make any difference to back pain?

3) has anyone got numbness and pain in a leg and saddle area , is the leg weak and needs support with a walking stick/crutch

4) how dose the condition effect you? Did you have any problems before Cauda Equina?

I m really greatfull for any other sufferers to come forward and share a few information please

I am open to any quetions from other sufferers , the more information I can get about living with this condition the better , many thanks in advance , Rose

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  • Posted

    Hi Rose,

    We run a support group for ces and we currently have over 400 members. In our group people ask lots of questions and find the answers, and gain alot of emotional support. Please let me know if you would like to join and I will tell you how I can add you. A lot of the information you require is quite personal so you can be assured the group is a closed private one.

    You can contact The CAUDA EQUINA SYNDROME ASSOCIATION at our website too and we are listed here on patient support group sections.

    Hope to help you further Claire

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  • Posted

    Many thanks for your reply , I d love to sign up , what do I need to do? Rose
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  • Posted

    Hi Rose,

    If you see the website address Benny kindly posted above and go to our website you will see a facebook tag at the top of the home page - click here and it will take to you to our fb page. if you Like our fb page I can then pick you up from there and add you to the group - looking forward to seeing you there. You can also join CESA as a member on the site as well.

    Claire

    p.s sorry its a bit long winded! smile

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  • Posted

    I have now done this but just in case , can I have your facebook details please

    Many thanks

    Rose

    Emis Moderator comment: I have removed the Facebook details and email address. Please use the Private Message service if you want to exchange these details. Just click the Message button under the relevant users name in the left column.

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  • Posted

    We delete content if it doesn’t meet the requirements in our Terms & Conditions.

  • Posted

    Hi Rose,

    My name is Suzanne and I have had Cauda Equina Syndrome since June 2010 after injuring my back at

    work in August 2009. I went to the GP immediately and carried on going and each time being given more

    and more tablets until in the December when I said my toes were going numb and the side of my foot the

    Dr said he would send me for an MRI scan. He did not however do it as an emergency and despite me still going back I did not get an appointment until the end of March 2010. I was on the max dose of Gabapentin,

    Tramadol and Diclofenac by now. I have since found out that the MRI showed my spinal cord was 95% compressed but the radiographer did not flag it up as an emergency and I was then put on the waiting list for a

    routine appointment with a spinal surgeon at the end of June. When I saw him she was horrified I was still

    working and told me not to return to work and to come back the following day to see the surgeon but he too

    did not book me in for an operation until the 7th July . I went for a pre op on the 23rd of June when I said

    that I was losing feeling down below and was operated on in 2 hours as an emergency. At no point when I

    kept going back to the doctor was I told not to work despite them knowing my job was physical and although knew I has a bad back because of all the drugs has no idea how serious it was getting.

    As a result of the delays I am now permanently disabled, walk with crutches, use a mobility scooter and have to use aids to empty my bowels and bladder. I have recently had a Spinal Cord Stimulator fitted which is

    helping my walking but causes serious back spasms and other problems . CES has ruined my life as you will

    know.

    It's so nice to know other people in the same position as I feel so lonely sometimes.

    Kind regards

    Suzanne

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    • Posted

      Suzanne,

      Its amazing what some of the Dr.s overlook. Glad you are fighting for compensation for your loss.Knowing all too well that money amounts to nothing compared to your dignity and physical well being.

      I was seeing a required provider through work because I had a work related L4L5 herniation. Moderate to large paracentral. He ordered an MRI and surgical consult right away. Took 3 weeks to get the MRI approved by insurance and the surgical consult never happened. I took myself to the ED with urinary overflow incontinence, bowel disfunction, bilateral sciatica, saddle anesthesia and numbness and tingling to both feet. Well, I was 41 days from injury to surgery and now I think the Dr's now involved are all nervous. CES is a nightmare. I hate everything about it. I have bladder and bowel retention. lower leg weakness, sciatic pain in right leg with spasms that curl my toes post surgery since 11/11/14. My EMG shows that I still have a compression and I might be facing yet facing another surgery and my neurosurgeon actually made a comment in my chart that I am trying to gain from disability. LMAO...as if!!! I'm $24,000 in the hole from lost wages alone as workmans comp dropped me for going outside of the provider network to the ED and somehow disability at 40% after a 90 day loss is going to give me a bank roll. Unreal, isnt it? I said why dont you just sign the work release and I will return to 12 hour days on my feet in the ICU. I prefer my regular life over this any day. 

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  • Posted

    Hi Rose and everyone,

    Didn't preview my post and it has all gaps, oops did something wrong, I will get it right next time when I get use to the site!!

    I forgot to say I am 49 years old.

    Kind regards

    Suzanne

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  • Posted

    Hi Girls the facebook group is under caudaequinacesa and my name is claire thornber. if you like the fb page I can pick you up from there and add you to the closed group.

    It is called The Cauda Equina Syndrome Association page, Hope that helps if not I can try and find you on fb instead.

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  • Posted

    Hi everyone,

    I stumbled onto this page by accident and have found it fascinating and informative - thank you - it is nice to see I am not alone. Recently, after a number of years of back pain I have been diagnosed with Cauda

    Equina Dysfunction. This I cannot find anywhere on the web. Can anyone tell me is tt the same as Cauda

    Equina Syndrome?

    -Claire - sent you a pm through facebook as would like to join the closed group.

    thanks

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  • Posted

    Hi suzanne , thank you for sharing your story , my live has been turned upside down since my disk collapse and I m in constant pain with my back and leg , its a nightmare , I hate being stuck at home 24/7 with nothing else to do than sit around I m only 37 , I wish there was something I could do
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  • Posted

    Hi Rose! I am sorry to hear about your pain and suffering. I understand it all to well and am hoping that the information that I provide here can be helpful to others as well. I will quickly relate my experience (which is much more extensive than I care to recount)...

    I am currently 39 years old. I have suffered with general back pain and issues for the majority of my teen and adult life. I am an active, generally healthy individual that always had a "bad back"....prone to muscle spasm and pain. I have sought extensive natural care resolutions (massage, chiropractic, acupuncture, Rolphing, etc) and typical western medicine therapy (Cortizone shots, many many physical therapy programs, pain killers, muscle relaxers, etc)... I got minimal temporary relief from the various treatments but never close to truly managing let alone resolving the issue.

    When I was 22 years old, I had a lower back "spasm" that - over the course of a 2 days escalated to a violent rupture that left my body in convulsions, loosing control and feeling of my lower left body, leg and foot, and in the most intense "electrical" type feeling pain of my entire life. I was diagnosed with Cauda Equina. An emergency surgery (L5/S1 discectomy/laminectomy) was preformed. I was able to get back function of bladder/bowel and left leg. I was left with major nerve damage, drop foot, and constant pain. I worked extremely hard learning to walk again...going through instense therapies. 2 years later, the disc reruptured. I had to have surgery again to remove the lodged disc. 1 year after that, what small amount of disc that was left, ruptured again. My body was only 27 years old but lived in constant pain and disfunction with so much nerve and muscle damage. I decided to seek out "the best" Neuro Surgeoun I could find. I found an amazing doctor at Scripps Hospital in San Diego. After interviewing with the doctor and going through physcological evaluations (I understand now why), he agreed to perform a fusion. My L4 and L5 were fused. My discs were completely removed and replaced with bone using a cadaver bone and a bone graft from my hip. It was a very extensive painful surgery and recovery. My therapy took many months. It took an entire year to heal. I had to be very protective to not form an addicition to the pain meds. With all of that being said, it was the best decision of my life and brought me back to a functional individual. I no longer have drop foot. I walk and function very normal. I am damaged from the damage and pain that I endured before and the scar tisuses of the surgery, but I no longer live my life enslaved to that hideous pain and disabling torture that those who have not experienced, do not and will not understand. For me, the fusion was the best choice of my life and working with an expert Surgeon in this specific area made all the difference in the world. It's been 10 years since my last surgery. I maintain my body with daily exercise, massage, acupuncture, and try to keep an eye close on nutrition. Since, I have had a baby, worked full time, skiied, surfed, hiked, swam...lived a normal life that everyone should be able to enjoy. I hope you the best and hope that you will be able to find the right resolution for your needs. Just remember, that there are educated professional doctors out there. Unfortunately, I couldn't find them in my local area.

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    • Posted

      Hello there.

      Would you be willing to share who the Scripps Doctor was? I am looking for a great one.

      Thanks

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