1. Community
  2. Bones, joints and muscles
  3. Cauda Equina Syndrome

Trying to make sense of CES

Posted , 6 users are following.

moonshiner
moonshiner

If a patient has a bad back for a matter of months, having tried all conservative treatments offered by the treating medical staff, to no avail, should they be referred for an MRI scan? If the patient has an MRI scan, due to months of bilateal sciatica and poor urine flow at times, and the scan shows a very large prolapse with Cauda Equina compression, should they be referred to the spinal surgeons for a discectomy, or left to 'see how it goes'?

 

0 likes, 16 replies

16 Replies

Next
  • rosanne16072
    rosanne16072 moonshiner

    Posted

    I personally think you need to see a specialist for back surgery. I feel for you. I wish you all the best. I  at my wits end with bladder problems still after 4 back surgeries on the same disc l5 S1 and still have pain. I went to the hospital last week with not being able to empty my bladder and numbness around the saddle area and they did an MRI and it came up normal saying obviously inflammation is my problem!! What to do?? No help!! So frustrating!! I hope surgery works for you!! Good luck 

    Rosanne

    Text me any time 

  • mark80483
    mark80483 moonshiner

    Posted

    I was in the same situation last year, so I went to a&E in leeds. 4 hours later I was in surgery as I was told if I would have left it any longer I would have been incontinent. Go to your local a&e as soon as possible.

    Hope you get this sorted

  • tony57334
    tony57334 moonshiner

    Posted

    Hi moonshiner. you may have read my posts. I have had what I would call a partial CES issue for 6 Years and my reseach suggests to me that this condition is far more common than some people would have you believe.

    There are so many conditions that could cause problems in the area of the spine, you have indicated.

    I live in the UK, so to a greater degree, we have our hands tied by the NHS. It is not easy to pursue this privately, unless we have private medical insurance. Most people in the UK must go through the NHS because this is the way we have been raised. We all pay into the system and we get ' free ' medical treatment when required.

    I have seen countless medical doctors in six years, and they have not given me the option of surgery. I have had bouts of sciatica in both legs, erectile problems, urine urgency and bowl pain. I have had so many tests but the MRI I assume, did not confirm a medical emergency.

    I'm really concerned about further damage ot the nerves and yet i have litlle pain.

    Just last Month, my Doctor said that he feared surgery would damage further, the problem in the spine, which seems to point toward stenosis and degeneration.

    I live in fear of being disabled but the doctors just say more physio to strengten the core muscles.

    Please do not give up hope as I have almost done.

    • moonshiner
      moonshiner tony57334

      Posted

      Hi Tony57334, thanks for your reply, much appreciated. Have just joined this site, glad to have signed up. I do hope you get some answers to your back problems soon. Are you saying that your MRI showed compression to the cauda equina and they still wouldn't operate??

       Do you have a herniated or prolapsed disc, or is it more disc disease causing you such pain?

    • tony57334
      tony57334 moonshiner

      Posted

      No, the MRI appeared not to indicate a medical emergency. ie CES, though the symptoms indicated CES. The MRI showed general disc diease. The proplased disk was bad, but when proplapse against a narrowed spine does cause severe problems for me. I did wonder if compression was not seen at the time of the MRI, perhaps because the condition became less accute. As I say. the pain I have is only occasional
  • terrielou
    terrielou moonshiner

    Posted

    Hi moonshiner I recently had a discectomy and I was on an urgent waiting list for mths same symptoms as you ,only urine flow stopping and starting weird sensation .bilateral herniation at l5s1.I was referred straight away but it took a while to get the op .You should demand an mri or just present at a&e and tell them you are having problems with going to the toilet etc maybe then they will do something or at least  get a consultant to look at you .hope you get sorted soon
    • moonshiner
      moonshiner terrielou

      Posted

      Thanks for replying Terrie smile Just after opinions and knowledge really, appreciate any comments. If you were told after your MRI that it was only a moderate herniation and you wouldn't need surgery so not to worry, and a few months later you presented at emergency with a full blown cauda equina complete, and then you found out (after your life had changed completely) that, in fact the MRI had not shown a moderate herniation, but a large one which was pressing the cauda equina, would you have something to say about that? Would you want to know why the MRI hadn't been reported correctly in the first place? Thanks. Moonshiner

       

    • tony57334
      tony57334 moonshiner

      Posted

      I would say a consideration for legal action. Doctors have a duty of care and they get paid for this duty. How you would prove it appears difficult but it is a consideration
  • terrielou
    terrielou moonshiner

    Posted

    moonshiner I would hit the roof ,in my case my doctors were fantastic from the word go when they sent me to a&e i was given ct scan first the day after an mri pain management for 3 wks before transfer to a bigger hospital to see spinal docs wk after sent home with pain meds and then waited for mths for the op went in at 10 am was out the next morn at 10am .I really would go nuts if that was me to be honest .my docs put the mri on screen before me and point out where the prob was and what it was doing to my body so yes i think whoever did not report the proper findings of your mri should be held accountable esp since CES is so devastating .
    • moonshiner
      moonshiner terrielou

      Posted

      terrie, I am devastated. To find out that my scan was under-reported left me speechless. After the MRI they simply referred me to the pain management team instead of the spinal surgeons, so I didn't even get the chance to have someone else advise me, I trusted these people with my care. Now I have a chronic cauda equina syndrome and nothing will be the same. Who would be accountable though? Would it be the radiologist who read the scan, or is it not his job to advise do you think? Not sure what to do.
  • terrielou
    terrielou moonshiner

    Posted

    moonshiner who sent you to pain management ?did they look at the mri ?I think the person who told you that it was only moderate would be the person you need to seek out as they told you didnt need to see a surgeon i suppose .I find it nuts that you didnt get to see spinal surgeon for him /her to make that decision weather you did/didnt need an op to fix the problem .I am so sorry that this has happened to you nobody should have to go through something that couldve been fixed to begin with ((big hugs)) .I feel humbled in complaining about my post op pain now.
    • moonshiner
      moonshiner terrielou

      Posted

      thanks for being kind, ces is a lonely place at times. It was the physio who's care I was under. She said that she had seen the report attached to my MRI  and it was good news as I wouldn't be requiring any surgery. I was surprised to hear this, given the intense bilatteral sciatica I had at the time, but I trusted what she said. She told me that she would be referring me to the pain team for help. So they pumped me full of Gabapentin and I tried to return to work but ended up losing my job due to the strong effects it had on my memory and ability to run a team, also sick time when I was in too much pain to be there. Afew months later I started to get worrying red flags and wasn't taken seriously at the doctors. Then one evening, I realised I could not pee and had a temperature and had lost all sensation in my saddle. Wnt back to the doctor and she sent me to wait at the hospital where I was taken in and given a 2nd MRI which confirmed that the 'moderate herniation' had gotten so big that it had oblitereated my spinal canal. I had a discectomy and laminectomy the same day. But I now am convinced that none of this should have happened if my scan had been read correctly? I hope you are ok and don't be feeling humbled, I am sure you have had to contend with a lot too :-)
  • terrielou
    terrielou moonshiner

    Posted

    wow you have been through the mill moonshiner .Here in Ireland everything goes through the doctor not physio so I really think maybe whoever refered you to her said thats all you needed.I think its dreadful that it took you to get ces before they gave you the op .I agree it shoud not have happened .do u have a copy of the first mri /or can obtain one ?

     

    • moonshiner
      moonshiner terrielou

      Posted

      I agree, it couldnt have been moderate if I did indeed get ces complete less than I year later. Fed up with it, not sure if I rather wouldn't have known what has come to light in a way, but in another way, I think I shouldn't let this pass either. No I don't have a copy but have had an opinion since. Will let you know, many thanks you have helped me confirm what I already thought. Is a physio qualified to read an MRI do you know?
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.