degenerative disc disease and refused ESA — Scope | Disability forum
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degenerative disc disease and refused ESA

happynotme Member Posts: 9 Listener
Been fighting degenerative disc disease for 30 years have been told that I can no longer work told this in 1999 had spinal op in 2000 and carried on then in 2014 told to stop second spinal op still carried on got to a point now where i cannot do it any more specialist has told me to stop once more and is unable to offer any more surgery so given up a job that I loved am in receipt of pip both standard rate but was refused ESA some how got no points for that so JSA is the way I must go can't walk much have to use crutches or a stick for very short distances. sitting is painful as well as standing for any length of time I do have a mobility scooter but then again I am sitting and have to stop Stand with crutches to stop spasm and then carry on don't now what to do or if work is a reality 


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,673 Disability Gamechanger
    Hi @happynotme welcome to the community.

    Did you appeal the ESA decision?
    Senior online community officer
  • Tiffy1691
    Tiffy1691 Member Posts: 25 Connected
    Hi. I have similar problems cos my spine is not in alignment so mh nerves are in a very small space. Consultant won't operate because of this. Been like this since around 2005. Sitting standing and walking brings numbness to mu legs but then pain in my lower back and start with sciatica. My ESA also stopped so am disputing but am really scared i will lose. Why put us through all this when our problems are real?
  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
    Hi @happynotme @Tiffy1691

    It’s great to meet you both this afternoon!!!!!! 

    I’m so sorry to hear that you are both having a real bad time!!   

    Sorry but can I ask at what stage is your ESA’s at present????

    Is there anything that I can help/support you with????

    Many thanks.
  • strew26
    strew26 Member Posts: 1 Listener
    Hi, I’m also a DDD sufferer. I have recently had an op from which I had major complications.... a massive CSF leak.  My back and sciatica are worse than before the operation.  I receive PIP enhanced on both.  I applied for ESA April 2016. In May 2017 they stopped my money saying I was fit for work, I hadn’t even been assessed. They had so much medical evidence over that time.  I have lost all my faith in claiming benefits that I’m entitled to. I have just started a new claim.  I’m suffering with anxiety and depression and can’t fight any more.  I have housing issues,  I have to attend an interview under caution for the DWP due to an allegation. It’s making me worse.
  • Tiffy1691
    Tiffy1691 Member Posts: 25 Connected
    Please get your local councillor involved. Let us know shat happens.  Bless you x
  • Tiffy1691
    Tiffy1691 Member Posts: 25 Connected
    Hi steve51.
    I put my first mandatory reconsideration in via citizens advice. Now we're over Christmas and New Year I'm awaiting the postman. What a predicament we're put in through no fault of our own
  • happynotme
    happynotme Member Posts: 9 Listener
    Hi just a update 
    mandatory reconsideration refused so asked for it to go to court had zero benefits since early November except pip luckily had some savings witch have kept the hound's away from the door but existence goes on can't really call it life with the pain and feeling **** with the Meds and then the financial worry 
    go to bed sometimes hoping I might not wake-up or it's all a bad dream but got to go on for the grandchildren
  • Tiffy1691
    Tiffy1691 Member Posts: 25 Connected
    It's a farce putting genuinely affected people through all this stress. Try advice centre or age UK. Even your local councillor can help. Please keep fighting, it's your right
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    I suffer spinal issues similar to DDD except that DDD is confined to the lumbar spine and mine has gone way beyond that and will, eventually, affect the entire thoracic as well. I was in receipt of ESA as well as DLA but the ESA has now been stopped as I was in receipt of a legacy which put me over the savings limit.

    My pain issues technically prevent me from walking at all, even though only 8 discs are currently provable to be in the process of becoming completely dead (a process that takes around 20 years for each disc). However, I simply take massive amounts of pain killers to reduce the pain to sciatica levels and then get about by simply putting up with it. Ofc none of this is visible and the assessors do not have access to the MRI's that prove it and the GP's claim not to have access either. Consequently, even getting medication is a major battle let alone getting proper support. I suspect that I will never get appropriate levels of either.

    Ever since I was diagnosed I was told I would never be a candidate for surgery because the problem was progressive and already too extensive. With the spine so difficult to work on and with problems caused by surgery on it so prevalent then perhaps no surgery is a good thing.

    I know that pain levels are subjective but I can only get some idea of seriousness by comparing medication levels and, to date, have only talked to one other person online who was on more medication than I am. The difficulties of assessing me is that, if I stand sill, I look completely healthy and, as regards the pain, they have to take my word for it when I move about. Not that healthy people really understand 24/7 pain anyway.

    The point I am trying to make though is that invisible issues are very difficult for the system to deal with and are also the ones used to defraud the system. So not always being treated correctly is a fact of life that we will all have to live with but getting GP's on your side is the only hope you have to being treated better. Personally I will only see one GP at my surgery for this reason as too often I would be dealing with a GP who didn't have a clue and would often be misdiagnosed with something far less serious.

    I don't suppose this helps much except to know that you are not alone.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.


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