New Cauda Equnia symptoms

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Hi,

I had a large disc herniation L5/ S1 in 2013 needing surgery due to CES after delayed response from hospital. I was left with bladder, bowel and mobility problems. Over the last two yearsI have been making slow progress until suddenly last weekend I developed the old symptoms back again- bladder, bowel and numbers to the groin. I went to A&E and after a 12 hour wait and a  MRI, I was told to go home as no Cuada Equnia but I don't trust the doctors any more and I am worried. Has anyone experienced a similar issues? Many thanks. 

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  • Posted

    I would just keep going back to gp every day honestly it's terrible how this is not treated and picked up on quickly .., especially when it's a medical emergency.. Terrible it is ... I am 7 months after surgery to remove L5 also .,., I'm a lot more mobile now was completely wheelchair bound for a long time .. Now I can walk about but not far get so far then just collapse.. I still have back and leg pain but not as bad as before surgery and numbness is from bum to toe ... It gets worse some days the numb electric shock feelings .i never recovered feelings for loo at all it's hard to deal with but you just need to keep going ... .. That's my fear another disc moves ... I hope you get on ok ....
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  • Posted

    Thank you so much for the encouragement to be proactive and I took your advice and insisted I discussed my concerns with a neurosurgeon this afternoon. He checked the Results of the MRI and could not find any evidence of nerve compression and advised that the L5/S1 bones are now making contact (no disc left) and which would explain the severe pain. I asked about an artificial disc and he said its to too late as they would have wedge the spine up to fit it in , so my advice is to monitor the disc high and make a plan early (as I was under the impression that when the disc wares out then you get surgery), The neurosurgeon also said that it would naturally fuse without needing surgery. But he had no explanation for the new Cuada Equnia symptoms and I was thinking on the way home- that maybe due the inflammation of the bones it has irritated the nerve area ? Not sure. He has suggested to see a neuro-urologist who specialises in Cauda Equnia. Still confused and not 100% relaxed but glad that there is ? no nerve compression. My advice is to keep strong which I know is not easy with CSE but things can improve as it took after a year for the numbness in the bottom and groin area to go. I take omega 3,6 &9 capsule plus vitamin b complex which may help you to support nerve regeneration?
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  • Posted

    Hi I would go to your GP and have a chat or your consultant ... Hard to trust doctors when you lose faith ... Its such a complex varying illness .. I have had it for nearly a year .. Xxx take care x
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  • Posted

    Hi I'm new to the group and probably got here like everyone else randomly searching the internet because you can't get answers and hope to find someone who can relate. Well I was thrilled when I read your post. I'm going thru the exact same thing as you. I had surgery did Ces 5 months ago. As soon as I woke I knew it didn't go well cause the pain was worst. Over the months since I'm getting worst. I now have sciatica in the opposite leg getting worst daily. My leg and foot are swelling and now my bladder is getting incontinent so much I had to get a catheter last week. They did an emergency mri which I was certain would show major compression and it didn't.

    I'm hoping you've had some further tests or perhaps can offer some advice.

    Misty

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  • Posted

    Hi Misty,

    I am sorry to hear about your situation, it is always more distressing when you either loss faith in the doctors or they have no idea. After the surgery two years ago, I did make slow progress and the CE symptoms only re-appeared recently, unsure why? You did not mention whether you had surgery and that would be a factor to consider?  My MRI did not show any compression but the more I reflected about what happened the more convinced that I needed a second option. I approached my GP who was really understanding and referred me to another hospital who are a centre of excellence (I already researched the centre before speaking with the GP) and I am waiting for an initial appointment. Since the episode of new symptoms it has settled but there continues intermittent signs that all is not well and I remain very concerned. I think if compression is not the issue then either inflammation from a sudden disc degeneration episode caused a toxic effect on the nearby nerves? Or there is spinal instability which would not always show on a MRI? I did ask for an extension/ flexion x-Rays which is a good method of establishing segment instability as I think it can be missed on MRI? But the first neurosurgeon dismissed the idea. Otherwise I am not sure what is going- on?

    I would advise since you are reporting urinary issues to ask for an urgent second opinion and maybe ask for nerve study which might reveal any areas which are being compressed? Remember it is your well-being that will be affected not theirs, so be assertive in asking for more investigations to establish what is going on.

    Let me how you get on

    Take care 

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    • Posted

      Thank you for the reply and I took your advice and went to my g.p. She is ordering a nerve study and I also am going to a gyna-urologist on Monday.

      Please let me know if you find out anything more about your symptoms as they sound very much like yours. I will also let you know if I find out anything more. I strongly suspect that something is not being seen on the mri.

      Kind regards and hope we each get some relief soon.

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  • Posted

    Hi, 

    I am so glad to hear you are making progress and I hope you will get some answers on Monday, please let me know if there anything I should be doing?. My symptoms have not changed but remain intermittent which is very distressing after the trauma I experienced two years ago. 

    Best of luck.        

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