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Ces

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pauline43123
pauline43123

I had ces was diagnosed 1st august 2014 had to pay for MRI scan as docs wouldn't send me on very day I had scan the doc who looked at scan phoned me and said that I have ces and should go to a&e straight away he text me the details and told me to show docs in hospital which I did they did a few tests on me and confirmed that I did have ces they did another MRI scan so they could see for them selves the next day then I was told at 11am that I would be having surgery between 1pm and 3pm I went down at 1pm my surgeon came to see me before I went down and told me what they were going to do and said they were taking 1disc out and shaving down the other disc but they said there is a nerve by the disc they were shaving down and if they touch it by accident I would lose the use of my legs all together so I said please don't touch it I had to sign paper so they could go ahead with it it's now 5 sept and walked to shops on my own so getting there I still have to stay on gabapentin tramodol when I'm in pain and paracetamol I'm on sick for 3 months which I should go back on 6th nov but seeing as my job is driving not sure if I can go back to doing that ! Thought that I was going to be so happy as it was my 50th on June 20th got married on 21st then on 28th June had to have colonoscopy the day after it all started and I couldn't walk it took up until we paid for MRI scan to be diagnosed as docs would not refer me for 1 so at the moment I'm on the mend and waiting for letter from hospital for my check up and all threw this my husband has been amazing x

0 likes, 9 replies

9 Replies

  • jasmine67220
    jasmine67220 pauline43123

    Posted

    Hi pauline43123

    Thank you for sharing your story. I am happy to hear you have walked to the shops on your own,  that is a big achievement. Its a shame doctors still deny people in excruciating pain an MRI. I really don't think anyone in their right mind would go to doctor or A&E and pretend to be ill. 

    Hopefully your recovery continues. I had my diagnosis in October 13 and returned to work March 14, now being made redundant 😢. I also live alone and have to look after myself. Still waiting for PIP Assessment,  almost 30weeks since I applied.

    Hopefully you will get strong and return to work. I have not been able to return to driving as my right leg was affected so much and its very weak. 

    Just keep positive and many thanks to your husband for being there. 

    Jas x

    • Artist46259
      Artist46259 jasmine67220

      Posted

      Sorry to hear about your job. I've encountered a lot of prejudice against disability in applying for jobs ie. even when I'm completely qualified for the role, I don't get shortlisted and though there are obviously a lot of people chasing after the one job, I can't help thinking that as soon as I tick 'disabled' the application form gets thrown onto the rejection pile. I've actually decided to no longer tick the disabled box when it comes to application forms. Is a 30 week wait time normal for the PIP assessment? 
    • jasmine67220
      jasmine67220 Artist46259

      Posted

      Hi. I applied for PIP in February and was told minimum wait is 26weeks. I know of a relation with a disabled child they got theirs within 2 weeks,  mainly because a social worker filed and signed it and got a consultant to sign and write in the form. I have called and I am told stop ringing we will write to you. I am also going through a medical negligence claim since I was delayed 16 days from when I first went into A&E and when I finally had surgery. They refused me an MRI saying I was exaggerating and making up my symptoms. Now I have my medical records they are full of lies 😩😩😩

      I have put on some weight too. Side effects of anti depressants, sedentary lifestyle and comfort eating. Trying to eat healthy now but with the job loss and a whole day alone at home day in day out,  only my faith will sustain me. 

    • Artist46259
      Artist46259 jasmine67220

      Posted

      I got a GP to write a letter confirming the nature of my disability which seemed to help. But yeah the civil service have lots of people to deal with. I guess you just have to be patient. I think you'll win the medical negligence claim, especially as you haven't delayed in making the claim. There's a 3 year statute of limitation in the UK. Not an expert, but from what I've read, the NHS will probably make you an offer of some sort of compensation. You and your lawyer will have to weight that against things loss of earnings, loss of potential future earnings, impact on quality of life etc. Legal action can take years, so you also have to be patient with that. Good luck with it. Sounds like you have rock solid grounds for compensation. In terms of diet, it definitely is better to take control of it now, rather than let it get out of hand. Everyone's different in terms of how much nerve damage is done by the CES, but for me, controlling what I eat helps a great deal. I'm lighter in weight, so there's less pressure on my spine and hips; bowel management is easier (bowel and urinary retention are easier to manage);I look better and feel happier than I have in years. Honestly, it's like night and day. Faith will help you get through the hard times. And being able to talk to people. You could maybe think about conselling, which is often offered free, and is completely confidential. It's definitely helped me in the past. Being able to talk to someone who isn't going to judge you, but simply offer a sympathetic ear.
  • Artist46259
    Artist46259 pauline43123

    Posted

    Hi Pauline, you should make a formal complaint about the refusal to request a MRI scan, and get a refund at the very least. I was diagnosed 9 years ago, and it's definitely a journey, unique in some ways for each person, to get back to a place that you're happy again. I think for many people with CES, it'll never be the same, but it can still be a good, happy place again. It helps that you're in a supportive, loving relationship. I was single at the time, so health, career, and the possibility of a relationship and a family were all devastated. That really hit home after the surgery and I was in the hospital shower room. There was a window looking out at the snow covered hills, and I dropped my glasses, but still using the walking frame to get around, and the stitches in my back still fresh, I couldn't bend down to pick my glasses up. Had to pull the cord for a nurse to come and help. That was one of many low points during the first few years following the diagnosis and surgery. I had depression for a couple of years. I gained a lot of weight, owing to the sedentary lifestyle imposed on me, and I guess because my body needed to heal, and as a side effect of the anti-depressants perhaps, as well being on such a low income that I found myself buying cheap, unhealthy food, and a lot of sugary, high fat comfort food. Makes me angry thinking about it. But fast forward 9 years, and life couldn't be better (well, technically it could, but you know what I mean). I'm 108 pounds lighter. Just last year I realized the will power with which I'd quit smoking a long time ago could also be used to control what I was eating and sure enough I've lost about 8 stone / 108 pounds / 47.5 kg since last May, and I'm about 1.5 stone from my ideal weight for my height. At the same time, a company called Urovalve are this year launching a discrete alternative to catheters which only needs to be replaced once per month and is fully internal (I have to self catheterize five times a day at the moment), I'm working part time, and I'm about to start qualifying as a librarian.
    • pauline43123
      pauline43123 Artist46259

      Posted

      Hi artist , I am going to take this further have been in touch with a solicitor that just deals in ces they have phoned me twice as they had to speak to there colleagues they did say to me they are interested in my case but as it's still early days they will phoned me back in about a month I said ok! Only because I still have numbness in my left thigh a bit in my bum going down back of my leg and going into my heel and on right side of foot going to my toes they have given me gabapentin to take as it's for the nerve system it's seems to be doing the trick, so I though I would see if I could do without them and stopped they for just over 24hrs and yes it started to work its way down my thigh again so I will just have to wait and see, before I had this I can't believe how many people have ces considering it's not very common I have to say its so nice to speak to other people who have it because you know what we are going threw and thank you for taking the time to reply to me I really do appricate it x
  • moonshiner
    moonshiner pauline43123

    Posted

    What a nightmare you've had. Thank goodness you got the surgery even if you had to do some of the legwork yourself.  There's a good closed support group on fb, you just need to search 'the cauda equina syndrome association ' and pop in a request to join. 
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