Neurological conditions
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Opinion on back pain going untreated

laurao92laurao92 Member Posts: 2 Listener
edited July 2019 in Neurological conditions
Hi everyone! 

I am am not really sure I am in the right place here, but needed to seek some advice on my story.

At 21 I had emergency surgery to relieve pressure on my spinal cord after getting cauda equina syndrome - and fast! This developed two days after trauma and was aggressive. I woke up with full saddle anesthesia and was in surgery within hours. 
The surgery was a huge success and being 21 fit and healthy I make a full recovery with the exception of some nerve damage and some disc residue showing on a follow up MRI. Six years on and for the last year and a bit I have suffered with back pain which seems to be ignored by a great deal of medical professionals. I have been sent to physio, had bloods done for endometriosis, NHS declined my GP request for ultrasound and so on. I am at the stage now where I am constantly dosed up on codeine, and I still feel a great deal of nerve pain. I am unable to turn over in bed, sit upright in the mornings, hinge at the hip, trouble brushing my teeth, getting dressed. I am still active on continue training to strengthen by body. The last physio I saw implied that I was creating this pain in my head out of fear. Can I just have your opinion please, I feel like more should be getting done to investigate my issue? 

Let me know what you think please! 

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @laurao92 and a very warm welcome to the community! 

    I'm so sorry to hear that, it must be so frustrating! Were you able to get a second opinion for the ultrasound or physio? 
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  • laurao92laurao92 Member Posts: 2 Listener
    Hi @Chloe_Scope

    I am back with a different Physio on August 6th, hopefully this one will be more helpful. 
    I am currently going from pillar to post. 
    Also starting to believe that maybe this isn’t a problem? And I shouldn’t be pursuing it since there has been so much kick back. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @laurao92,

    I really hope the new physio is helpful! I know it must feel frustrating and feel like you're going round in circles!

    What do you believe the problem is? If you're in so much pain and it's having such an impact on your mobility then I would advise you continue to seek help.
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  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,941 Scope community team
    Hi @laurao92 and welcome to the community!
    To echo what Chloe's said — if you're still in pain and it's affecting your quality of life, please carry on seeking help.
    Make sure to let us know how you get on with the new physio though. :smile:
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  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    edited July 2019
    Hang in there. We are currently getting a second perspective on our son’s never ending bowel and bladder issues. Let us know how the new PT helps you. Definitely pursue it. Do not feel scared to ask questions either. 
  • WaylayWaylay Member Posts: 915 Pioneering
    Hi @laurao92 ,

    I'm not an expert, just an experienced chronic back pain patient, so I can't diagnose or anything. I can offer somewhat-educated opinions, but they're not guaranteed to be correct!

    I'm so glad your original surgery went so well! Back pain is often dismissed by medical people, as it's so common - most people will experience it at some point, and there's no way to tell how much pain someone's in. Most cases aren't serious, and get better by themselves within weeks/months, or need bit of conservative management: physio, keeping active, over-the-counter meds, massage, etc. 1.5 years is a long time, tho! When were you referred for physio? It could easily still be a soft-tissue problem, so don't get scared, but it clearly needs looking at, particularly given you're having functional problems.

    Docs don't like to do scans because most adults have something that looks bad on a scan - a bulging disc in the spine, osteoarthritis in a knee, etc., and most of them have no or very mild symptoms. Doing scans can actually give patients erroneous ideas that there's something badly wrong with them, when their pain is actually due to a muscle/ligament/tendon problem. A lot of long-term pain is really frustrating, because scans come back clear, so it's unclear what the cause is. Obviously scans are a waste of resources in these cases.

    So I see their point about not doing scans, but some people *do* have symptoms due to something visible on a scan, and a few people (almost certainly not you!) have something really serious, like cancer. Refusing to investigate can mean that these things occasionally get missed. Keep pushing! 1.5 years is a long time to be in pain! Just be aware that sometimes there is no clear diagnosis.

    Telling patients that it's "in your head", like that stupid physio did, is such bad bedside manner! *ALL* pain is in your head, actually, because it's all created by the brain (this is a long discussion), but even when pain is entirely psychosomatic, it's still real! That physio was an ****.

    Some questions for you:
    - Was your original problem a slipped disc? Which one? If not a slipped disc, what caused the pressure on your spinal cord?
    - How did the current pain start? Was it sudden, do you remember a particular event, or it did it come on slowly?
    - Do you have radiculopathy (sciatica in your leg(s) or similar pain in your arms)?
    - Where is your neuropathic pain? What does it feel like?
    - Do you have other types of pain? Other symptoms?

    Cheers,

    Waylay






  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @laurao92, how are you doing today?
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