19 days Post Op for Cauda Equina

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Hi,

I am now 19days post op. Its a long one to tell, but have been, as I know now,after talking to the Cauda Equina Support Group, a few days prior to admission to hospital,that I had several 'red flag' symptoms, alot longer before the GP's, Ambulance services and hospital listened to me!

To say the least , the pain is something I cam.only describe, as off the point of scoring!

I had a Microdisectomy back in 08 and it was amazing relief! For a few years I had complete bliss. Then the pains started to niggle and I just pit up with it. When it got to the point of no longer being able to cope with normal over the counter meds, I went back to GP. I was pushed from here to there and every bloody where! I was completely fed up! Thinking of the pain, makes me feel frustrated that I put up with it for so long. Then things started to change. I started to get numbness, tingling in one leg then it would switch back and forth to both and then finally to both. I put the constipation down to meds and even not urinating as i should, even though i was drinking lots of fluids, due to meds making me very dry mouth.

In July/Aug i had 5 ambulances called and two visits to a&e and still no one listened. I saw my orthopaedic fellow at hospital who told me i was exaggerating the pain!!! This was the Thurs prior , a week prior to admittance! Repeating myself was getting boring and very tiring. I saw my GP the following Wed, who sent me to a&e with a letter to see someone from orthopaedics. This woman couldn't examine me as i couldn't lay on the bed. I had to have a rectal examination and she said all was fine and not worry unless I practically messed myself. I asked why, and she said if you do, then you would be rushed to John Radcliffe having emergancy surgery. Still nite, no explanation apart from she would make it her priority to get me an emergancy MRI . Which i had on the Fri. I phoned on the Mon and that was a waste of time as there was a problem finding it, let alone being able to open the file.

The next day i finally called someone at CES and told them all and they said i had and was displaying 'red flag'. I called my GP surgery and got a call back from another GP and explained, again!!! She told me she was writing a letter for my husband to collect and to go to a&e again! I was admitted. That was the Tuesday, on the Friday i had an MRI and that afternoon i was in surgery. I have still had no explanation as to what Cauda Equina is and what its about? Everything i know is from what i have read. I was supposed to have a 2week follow uo appointment, but have one for nearly 4weeks. Can anyone explain if they have had similar circumstances?

Thankyou for taking the time to read and i look forward to hearing from you.

Heather smile

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11 Replies

  • Posted

    Hi Heather. Your story is unfortunately fairly typical of those of us who were left to develop cauda equina syndrome :-( 

    My own story is not dissimilar to yours in many ways.

    I doubt hope you start to feel better soon. Did you go into full retention before your surgery and what symptoms have you been left with? I would suggest that if you feel the doctors have been negligent in terms of your care, you contact a solicitor. You have three years from the point of injury to do so, but you probably just need to concentrate on getting well at the moment. 

    The follow up care for people with ces is not good in my experience,  especially if you are left with no sexual function,  as in my case. Hopefully this hasn't happened to you though. X

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    • Posted

      Hi Moonshiner

      Thankyou for your reply. I have contacted a legal.team. I am also trying to apply for PIP. Don't hold out much hope on that one as I am completely terrified of being refused. Why is everything such a fight? I still have numbness in my right leg from knee down and my foot is like a dead weight that drags. I still have no sensation to urinate, but go as I feel I should with the amounts of fluid I consume. After being told by a spine fellow that I was exaggerating my pain, leaves me feeling a total loss of faith in the medical side of things. As I have got an infection also , the on call doctor told me I had no right to call my self a Cauda Equina sufferer. How bloody insulting? I am finding it hard to come to teems with what I have read about and only hope things will get better. It seems like everything,from now on, will be a continued fight. sad Why dont those that don't suffer or health professionals understand!

      I won't know about sexual dysfunction yet as I am far to sore from surgery. I mean how I am to know when my marriage has been suffering in that department for so long prior to op. Some things are so awkward to explain. I am so fed up with it all. Nice to have someone to talk to about it though. So thankyou.x

      Heather

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    • Posted

      Hi again :-)  you can chat to me anytime,  I helps run a support group for people with cauda equina syndrome. I decided a while ago that I wanted to try and support as many people as possible. 

       By sexual dysfunction I meant perennial numbness,  hopefully you will make a good recovery and not be too affected by the symptoms of ces. 

       It must be awful to be told you don't have cauda equina syndrome??  It will be in your medical notes surely,  why would someone suggest that you don't have it? Glad you contacted a solicitor xx 

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    • Posted

      Thankyou

      I am sure we will chat more often .

      I have contacted legal advice, as I feel I would like an explanation as to why I was left so long? Even from having previous back surgery and symptoms this rime being so very different, I thought that the illumination process to rule out CES would have better for them to do, even if I didn't know it!

      The pain was intense and of the scale!

      I will have to wait until I see my consultant to discuss further treatment etc... And hopefully get an explanation. Yet I still want to know why, with what was presented to them in my symptoms,they did not act? They all seem to think that by losing all control of bladder and bowels is the sign. Yet retaining urine and bowel movement is a red flag.

      Its all about raising awareness about CES.

      I hope feeling comes back in my leg and foot. So when that, and if does, does that make me no longer a CES sufferer?

      I also need to know my options now and what needs to happen to try and regain it back.

      Kind regards

      Mctavish smile

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    • Posted

      also do you know of many that have been successful in their legal cases? Regardless of severity?

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    • Posted

      I don't know surprised. All little envelope appeared in the corner which invites you to private message,  some I just did that. I've no idea how to retrieve!!?? :-) 
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    • Posted

      Hi,

      I have tried to give my email address on this message and it won't send. I presume privacy and all that?

      Do you have Face book? If you do, request me. Heather Stonehill-Brooks. Hope fully that way we can message each other? smile

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