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Pain that never goes away

Posted , 3 users are following.

jerome09112
jerome09112

im new and reading other people's story's help me a lot I had my ces operation on the 01/03/14 and the pain makes it hard for me to carry on the pain is less then it was before the operation but still there too much for me sleep what sleep walking can't pain too much water works not back to normal constipation all the time my balance has gone my foot drop still there my feet our numb cold with pins and needles sitting standing no rest pain pain pain I'm lonely don't go out scared of wetting myself out side my life seems over but I get some comfort knowing I'm not alone why oh why Didn't someone see my red flags 

2 likes, 7 replies

7 Replies

  • fi03229
    fi03229 jerome09112

    Posted

    Hi,

    You are not alone but CSE can make you feel that way due the nature of the problems associated with it. I had CSE in 2013 after A&E failed to investigate correctly a large anterior L5/S1 herniation. I was left for 4 weeks battling with doctors as I knew something was very wrong only to be told that it was semi CSE. I was left with bladder, bowel and leg function problems. I was very sacred at the beginning but my message would be, that I did improve, very slowly as with CSE it can take several years to know what will the long term issues. So, do not give up hope and talk someone about how things are for you right now. Also have you looked in what is causing the pain such as a disc or nerve? Consider a referral to a pain clinic? There is services available via the GP which can help with managing bladder problems so you can have confidence again.

    I was depressed after the surgery as left with preventable problems and this caused a lot of anger which can be destructive, so consider a referral to a counselling service. I fought and assisted to find ways to mange this problem and as a result my confidence slowly returned. There are good and bad days but overall 2 years post CSE I am strong again and do not let CSE define me.  

    Please talk to someone like your GP about how you are feeling.

    Take care  

  • karen81972
    karen81972 jerome09112

    Posted

    Hi there .. Please be assured I was same as you in beginning after surgery .. Once you work out what combination of mess work for you that's a huge step to pain help .. Also as times goes on your body heals from surgery making things much easier takes a while though I'm a year into it now and I only just on my feet was wheelchair bound completely or in bed ... Slowly but sure I can now walk a bit not much or far but I'm so relieved... I'm still in pain but it's manageable now and some days :nights are quite hard and the numb cold feet and legs and bum and pubs and needles and restless leg is quite awful but you just have to try and cope ... Try and remain positive ... The bowel/bladder issues time will tell too .. Mine hasn't got any better .. However I'm trying to learn to cope with it and I have a lot of medical care from GP district nurses and pt ... Wishing you a speedy recovery x
  • karen81972
    karen81972 jerome09112

    Posted

    I was also very depressed and angry as fi says ... Very hard when you are suddenly faced with a life of disability and when if things had been treated earlier none of it would happen .. You have to try and get past that too takes time it all takes slit of time get as much help as you can medically .. And even now I still have dark days but these aren't as much as at first when your trying to recover and deal with it all .. There are three fab private closed groups on Facebook I find them a great help search cuada equina syndrome in search bar xx
  • jerome09112
    jerome09112

    Posted

    Thank you Karren for your input
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