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Do I have Cauda Equina Syndrome ??

Posted , 8 users are following.

karina90146
karina90146

I am a healthy 19 year old girl but a few months ago I noticed a lump / swelling on my lower back but thought nothing of it. I started getting weird tingly sensations down my legs, feet, and bum at various times and locations. It started off quite rare and within the last 3 weeks has become extremely regular and quite frustrating. 

I went to the doctors and they sent me for an ultrasound on my lump to see if it was a cyst and all it showed was swelling or fat tissue. 

Over the last week I have felt nauseous constantly, my bones and body aches and feels weak, and I feel fatigued. I haven't made bowel and urine movement nearly as often as usual. 

I'm getting really scared and frustrated because it's gotten dramatically worse over the last few days. 

1 like, 13 replies

13 Replies

  • JP940
    JP940 karina90146

    Posted

    I think you should ask for an MRI scan. Swelling could be leakage of spinal cord fluid resulting from damage to the protective sheath around the cauda equine. It needs to be checked out ASAP.
  • keith94082
    keith94082 karina90146

    Posted

    The lump thing is only fat they say. If ur bowel and bladder are playing up that is a concern plus the tingling . I would try and get a Mir scan done.
  • jerry1776
    jerry1776 karina90146

    Posted

    It’s essential to see a good doctor who will examine you properly, do some screening blood tests, and ask for advice on the telephone from a specialist which in your case might be a neurosurgeon. If you feel you need a scan but it is difficult to persuade your doctor to order one, think about requesting one direct from a self referral MRI unit. If you’re desperate it may be a good idea to go to the ER / A&E Unit because it’s much easier and quicker for them to get specialist advice than it is for your GP. If everything feels normal in your saddle area (as in horse saddle, includes the inner thighs) and if you have no weakness you have noticed in your lower limbs and if you can feel your bladder filling up and emptying, it’s unlikely you are in serious trouble from this particular rare condition, CES, but keep an open mind until you’re sure.

  • Dark_Horse
    Dark_Horse karina90146

    Posted

    If you are having problems with your leg and bladder your spine may well be involved.  I think cauda equina conditions could be difficult to detect and need the right type of MRI. 

    An EMG shows I have nerve impingement at S1. Yet I have had or four or five MRIs not finding anything to explain it.  I am now being told I should have other types of MRIto spot the problem.The S1 nerve root  at the bottom of your back controls parts of the bladder, bowel and calf. Apparently, 1-3% of the population get this condition according to pages on this site, yet it is rarely diagnosed. 

    Good luck

  • donal03912
    donal03912 karina90146

    Posted

    How are you getting on. Have you had diagnosis,. I’m three year in since op and showing slight improvement,. Keep positive karina,. Donal
    • karina90146
      karina90146 donal03912

      Posted

      After a long wait and many doctor visits, I have an appointment with a neurosurgeon mid-March. The symptoms aren’t as strong as they were in December but are definitely still there. Hoping we can get to the bottom of this ASAP! Thanks for your concern smile 
    • donal03912
      donal03912 karina90146

      Posted

      There’s a 24/48 hour window following on from the onset of Cauda equina for successful outcome from surgery. I was misdiagnosed and operated on 10 days too late,. I have to live with that misdiagnosis for the rest of my life,. Push harder for immediate confirmation of your conditions x
    • david60673
      david60673 donal03912

      Posted

      when did you learn of the correct diagnosis? was it less than 3-years ago? you may be able to claim
  • Dark_Horse
    Dark_Horse karina90146

    Posted

    If you are in the UK, I would try and see Mr Panicker or one of his team at UCLH as fast as possible - or an expert in Cauda Equina who would probably be a Neuro Urologist - not an Orthopaedic surgeon. (Orthopaedics are only any good for bone and disc issues and they are not the only reasons why the nerve may be impinged.)

    Think about this - what you describe is consistent with the Cauda Equina nerves being impinged. You would expect any qualified person to realise that a piece of fat around the Cauda Equina nerve root could cause serious  problems. In your case that does not seem to have dawned on them.

    I would certainly put them on notice that it looks like they missed something - and what the consequences might be if they have - like a £5M legal claim for medical negligence.

    I hope it is resolved soon....good luck

    A lot of GPs and consultants are not reliable in this area.....and have a lot to learn.

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