Cauda Equina Slow Onset - Difficult Getting Diagnosis

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I am having difficulty getting a diagnosis when I have all or most of the symptoms of slow onset cauda equina.   ( i.e. Calf weakness and urine retention.These cause a lot of bladder infections and foot problems.

 

I would like to hear from any other patient's who have had a similar experience.

A BMJ article emphasised the importance of getting an early diagnosis. The reality is only 50% of patients get a diagnosis which is surprisingly low.

The hospital treating me does not have the right equipment to needed to diagnose the problem as it does not have the right type of MRI scanner or Urodynamics Equipment.  Another hospital, UCLH, a few miles away does have all or most of the equipment needed.

I am struggling to understand why the hospital responsible for my treatment has not suggested I need investigations done elsewhere and why my GP has not suggested it either 

.

 

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7 Replies

  • Posted

    Hi, 

    I was in a similar situation to you.

    If you are living in the UK you can request ( it is your right) that you're GP refer you to the hospital or treatment centre of your choice which can be any where in the country and not just local to your home. I got fed up with negligent approach the first hospital was taking so I did some research and asked my GP to refer me to another specialist centre urgently. Don't put up with second rate treatment. The problem with CAuda equnia and especially slow on set is the lack of training or knowledge about it. Even your GP may have limited knowledge about Cauda equnia so you have to be your own advocate. 

    I hope your situation improves soon. 

    Best wishes 

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  • Posted

    Insist that your GP refer you urgently for Neurosurgical review and an MRI scan. If you have 'red flag' symptoms of Cauda equina syndrome then your GP will know that this is a surgical emergency 

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    • Posted

      I am telling my GP in no uncertain terms that:

      1. I need to see a Neuro Urologist PDQ

      2. The 4 or 5 MRIs my GP has agreed to would not spot some problems. So I need other types of MRI - at least 2 -  Upright and with dye - one spots stenosis, the other spots compacted blood vessels compressing a nerve. 

      3. I  might also need an EMG to check the reliability of any MRI results and a Urodymamics test to ascertain if retention is due to a blockage or muscle weakness.

      This looks like a £5K bill and I am wondering how my GP will respond.   If it was an arm, I would not spend £5K to ascertain the cause of the problem. But since it is my legs and marbles, I would spend £5K to find out the cause.

      I wonder if my GP will be like minded and see it the way I do....

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    • Posted

      I am working on that ... I had to pay privately to see a Neuro Urologist who suggested an MRI using dyes to detect possible issues where compacted blood vessels can cause nerve impingement.  He also suggested a Urodynamics study. The consultant was from UCLH where I could perhaps have had the same investigation on the NHS.

      I then visited one of my GP's to ask for a referral to UCLH Neuro Urology. He agreed reluctantly after conversation through gritted teeth on both sides. Some other things did come up in the conversation such as a numb area on my calf and an exercise used in the US to test for S1 nerve impingement. The GP declined to look at them and I am not sure why.

      Anyway, what is interesting is I normally see the GP who is a senior partner who goes to extraordianary lengths to make sure I see him rather than any other GP at the practice. So I think he has me down as either a high risk patient or he likes me a lot.

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  • Posted

    I regret to say that my initial view is that you may find it difficult to establish negligence in circumstances where there was a slow onset of symptoms combined with the lack of clear CES nerve root compression on MRI - you would need to establish that no responsible GP or other treating clinician would have failed to refer/investigate or treat you.

    I do not think that I should comment further as it is too case specific and I cannot offer firm legal advice without having all of the medical records and background detail. You would need to see a local solicitor in person; and ensure it is a medical negligence specialist with experience in CES cases. 

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    • Posted

      I see your point(s).  It is not as simple as referring a patient for an MRI, the patient needs the right type of MRI depending on the  possible cause of the nerve impingement. So:

      * If the possible cause is thought to be stenosis, you need an upright MRI

      * If the cause is compacted blood vessels, you need an MRI with dye.

      My GP has referred me for 5 MRIs - all of the basic type - and appears not to have considered the other two at all. Or the possibility the referrals could be for the wrong type of MRI....

      The reality is a herniated disc is easy to identify. However, that is not the only possible cause of potentially serious leg and bladder weakness. Stenosis and compacted blood vessels are both possible and can be as debilitating as a herniated disk in the end.

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  • Posted

    My mri.was laying down and they still

    s aw my herniated discs and the cauda equina however it was more pronounced on the 2nd one I had . Maybe depending on the country some Mri.systems could just be more outdated not to spot the details or if they are small and not as pronounced could be a reason for not seeing it too. One reason they could be just doing basics could be insurance and how much and what they would actually pay for, which is just as frustrating especially when you know something is wrong and either no one is willing to help, dnt understand a condition or irresponsibly over look conditions. ( some of my back story is under my profile post if you wanna check it out ) If you have a type of insurance that would allow you to just go to a specialist I would still look for someone who deals with c.e and see what they might be able to do , it could even be a problem that seems like c.e but be something else. Explore all your options until you can get clear answers.

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