Worried about Cauda Equina

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I do have significant DDD for my age (32) and also a lumbar herniated disc. I was given my first ESI that same day, the pain increased for a few days, then I was better for a few weeks where the pain was tolerable.

About a month later, I had an even worse flare, had to go have another ESI the same day I called my doctor. Pain increased worse that go around, had to be put on a steroid, and after a week and half it was semi-bearable.

The pain will be incredible in my lower back, shoot up my back, around my ribs, down into my hips, into my thighs and calves, my neck stiffens and I get terrible tension headaches. All of this is ALWAYS worse on the left side of my body. I'm on day seven of this now, although all last week I was hurting, not badly, but I felt it coming. I've barely slept all week and when I do it is unrestful because the pain and or spasms wake me up. I'm also having a new pain that feels like spasms in my rectum and that's getting more intense.

I went to the ER yesterday and happy to say my anal sphincter is working well and the reflexes in my legs are still okay, even the left one that I feel like is going to give out anytime. However, they did go ahead and do an MRI just to make sure nothing else has changed since my MRI at my spine doctor like 3 months ago. Surprisingly I now have a herniation at L5-S1 and it is pinching a nerve in addition to L4-L5 herniation and severe DDD that my neurologist already knew about and was treating me for. I feel somewhat relieved in the fact that they didn't diagnose me with Cauda Equina, but did tell me I'd have to pay close attention to any changes.

I have only urinated twice today even though I have been drinking alot and I usually got 6-8 times a day, I usually cannot tolerate even the smallest about of urine on my bladder. Just recently when I got out of bed the back of my left thighs and my left knee felt numb.

I'm worried they didn't take me seriously because my anal sphincter was still working and I still had reflexes on my knees on my left leg, which I can barely lift, those were the only two physical examinations they gave me yesterday. In addition to that I do not currently have insurance so I'm worried they are putting me off, I don't want it to get it a point where I have permanent nerve damage.

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  • Posted

    My neurosurgeon is going to be out of the office all this coming week. I'm wondering if I should go back to the ER.

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  • Posted

    If you are feeling numb anywhere then there must be pressure on the nerves somewhere, I had this, and it was cutting into the nerves, had to be rushed to surgery, I am thankful I got it in time because I’m all good now, but I had numbness & pins and needles all over my lower regions, it was horrible, took weeks to come back too, this is easy for Dr’s to enderestimate from what I have read so I’d not take any chances, I be in at the first sign on numbness.

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  • Posted

    Thanks for your reply. The doctor at the ER who found the additional herniated disc at L5-S1 only mentioned that and my previous known herniation at L4-L5, but the nurse mentioned that I also had a compressed nerve, but the doctor did not. My MRI was without contrast and I'm worried they missed something.

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  • Posted

    Dear M,

    You sound well informed. Sphincter appearing normal at this moment is no insurance against permanent CES disability. Your level of concern is fully justified. Now you need the counsel of a wise spinal surgeon to decide whether a pre-emotive strike against CES is appropriate. Always ask yourself “Could I accept being in my present condition for the rest of my life?” If not, action is required and if reassurance is given, you need to feel in your bones that mere reassurance is the appropriate action. Saddle anaesthesia is a hackneyed phrase: you yourself can determine whether you have it: what you should be looking for is any alteration even if only one sided, in sensation in the (horse’s) saddle area which includes much of the inner thighs, and the inner rather than outer surfaces of the buttocks, the bull’s eye so to speak being top of coccyx and  NOT anal orifice; and certain parts but not all of the genital apparatus.

    If you have no saddle anaesthesia (check out pressure and temperature perception by aiming the shower full throttle at the suspected parts); and if no alteration in bladder function and/or sensation, then you’re probably not at risk and can sleep easy.  Be very careful of those who say, look you have (or don’t have) this so it cannot be CES.  Any deterioration as hours and minutes pass, means you should be in the ER and praying for a half decent doc. to examine you. Play it really safe, then you won’t be sorry. You can tell I have regrets because I didn’t make enough noise and told my spouse to keep quiet.

    CES is a difficult condition to avoid (even for the docs), that’s if you are one of the rare folks who have CES written all over em. 

    Best regards,

    1776

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  • Posted

    I got my final results from MRI. Does any of this indicate that it could be cauda equina?

    MR Spine Lumbar (MR SPINE LUMBAR) - Final result (06/02/2018 6:02 PM)

    Procedure Note

    Interface, Imaging Results In - 06/02/2018 6:48 PM EDT

    MRI LUMBAR SPINE WITHOUT CONTRAST:

    HISTORY: Chronic low back pain. Left leg numbness. Degenerative disease. Cauda equina syndrome.

    COMPARISON: None

    TECHNIQUE: Routine, high-resolution, and multiplanar imaging was performed.

    FINDINGS: Assuming 5 lumbar type vertebral bodies, the conus terminates at the L1 level. Lumbar vertebral body heights are preserved. Degenerative disc disease with disc desiccation at the L3-4, L4-5 and L5-S1 levels. Mild loss of disc space height at the L4-5 level and more moderate loss of disc space height at L5-S1. Slight retrolisthesis of L5 on S1. Facet arthropathy. The osseous marrow signal is mildly heterogenous. Degenerative changes involving the sacroiliac joints.

    T11-12: Disc bulge with osteophytosis with slight indentation of the anterior aspect of the thecal sac.

    T12-L1: No significant narrowing.

    L1-2: No significant narrowing.

    L2-3: No significant narrowing.

    L3-4: Disc bulge with small area of annular fissure possibly with associated disc protrusion at the 6:00 position. Facet arthropathy and thickening ligamentum flavum. Mild central canal narrowing.

    L4-5: Disc bulge with osteophytosis, facet arthropathy and thickening ligamentum flavum. Focal left paracentral disc herniation measuring 1 cm in transverse dimension and 0.8 cm in AP thickness. There is focal narrowing at the left portion of the central canal and thecal sac related to disc herniation. It compresses the left L5 nerve as it is exiting the thecal sac. It also displaces the left S1 nerves in the thecal sac. Otherwise mild narrowing of the thecal sac towards the right side. Mild neural foraminal narrowing bilaterally.

    L5-S1: Disc bulge with osteophytosis, facet arthropathy and thickening ligamentum flavum. There is a broad-based left paracentral disc herniation measuring 1.5 cm in transverse dimension at its base by 0.6 cm in AP thickness. There is narrowing of the anterior portion of the central canal and lateral recess regions, left greater than right. There is compression of the left S1 nerve. Moderate to severe right and mild to moderate left neural foraminal narrowing.

    IMPRESSION:

    1. Degenerative disc disease and facet arthropathy.

    2. At L4-5, there is a focal left paracentral disc herniation. Focal narrowing of the left portion of the central canal and thecal sac related to this. There is compression of the left L5 nerve. There is also some displacement of left S1 nerves in the thecal sac. Mild bilateral neural foraminal narrowing.

    3. At L5-S1, there is a broad-based left paracentral disc herniation. There is narrowing of the anterior portion central canal and lateral recess regions, greater on the left side. There is compression of the left S1 nerve. Moderate to severe right and mild to moderate left neural foraminal narrowing.

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    • Posted

      That’s a pretty concise rundown, I’m reading nerve compression and that makes me nervous but I’m far from being an expert, they know what’s best I suppose but you are the one experiencing what is happening, I’d trust your gut tbh, if it feels wrong then ask the question, Cauda Equina issues seem to be missed very often because it is so rare, if you are unsure get a 2nd opinion? I remember when I had my scan b4 the op the whole room of dr’s & nurses gethered round my scan like it was a new case study they had never seen, evidence that they don’t see it often eh.

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    • Posted

      Thanks for the reply. I spoke with one of the nurses at my neurosurgeons office and they are working me in Wednesday because they are concerned, but want to see the images themselves, thank goodness my Mother was able to go get the CD of the images today. They wanted to see me tomorrow at 9:45, but they are 4 hours away and that's just too much on my Mama two days in a row since she's a little older. Of course my neurosurgeon is out of the office all week, but at least I will see someone that isn't an ER doctor and specializes in the spine.

      From the research I done it indicates I have mild spinal stenosis, bone spurs, nerve compression at L5 and S1, on top of the 2 herniation and 2 bulges. Lord have mercy, the neurosurgeon was only originally treating me for the herniation at L4-L5 and that MRI was only 3 months ago or so.

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  • Posted

    Dear M,

    CES is a clinical diagnosis not an x-ray or scan diagnosis. This detailed scan report confirms in effect that  (if the scan doctor ie. radiologist were blindfolded and unable to see your clinical records, summary of clinical opinion, etc) he would not be ringing the alarm bells about cauda equina syndrome. This is because there is no mention of compression of the cauda equina in your report. The symptoms are more worrying than the scan findings. There is nothing about the scan findings that suggests you need an urgent operation. What you do need to do however is find out whether in your surgeon’s opinion, nature should be allowed to run its course or whether help is needed from a skilled surgical pair of hands and skilled eyes peering down an operating microscope.

    This is already your plan of action I believe.

    The nerves (or more accurately) nerve roots to look out for particularly in suspected CES are S2,3 and 4. These do not seem to be a worry in your case. But action may need to be taken about nerve roots which your report says are affected, if permanent impairment is to be avoided.

    By the way here is a translation of a sentence in your report:

      “Left L4/5 disc . . . also displaces the left S1 nerve in the the always sac”

    Translation: . . . “disc . . . is large enough to push aside (a little, one might guess) the first sacral nerve as it lies alongside other nerve roots of the cauda equina - or bundle of nerve roots - before it comes out from being enclosed within a long tube of tissue which itself runs down within the spinal canal or space at the back of the vertebrae.”  The nerve root has to emerge from within the tube and gradually head forewards and away from the midline before it can pass through a narrow canal at the side, the neural foremen, and leave the spinal canal entirely, carrying nerve fibres to the tissues they supply.

      A more severe instance of the abnormality described in that sentence of your report would at its worst involve obvious compression of most or all of the bundle of nerve roots running within this tube  (like strands of wire within a rubber cable.) This more severe scenario is much more likely to be seen where there is a central disc prolapse - one in which disc material heads straight back into the central part of the spinal canal.  A central disc prolapse is likely to affect both lower limbs but not necessarily to the same degree. Back pain is likely to be severe but there may be no leg pain at all. One such bad central disc protrusion could clobber all the nerve roots supplying the lower limbs and/or pelvic organs  (or most) at once, causing major lower limb paralysis (my scenario) and even double incontinence (not my scenario). The precise location or level of the cauda equina compression would dictate the extent of the damage, whether limited or widespread.  A pretty bad outcome in worst case scenarios would therefore be lower limb paralysis, plus double incontinence, plus loss of sexual feeling, capability and function. At almost any age.

     A paracentral disc protrusion is much more common and much more limited in terms of the number of nerve roots affected.  The disc material has headed obliquely, back and out to the side.

    The question to be addressed is: how much trouble are (your) affected nerve roots in; and what’s the best course of action to get things back to normal.

    I don’t write often these days but sometimes it seems right to try and put a little power/knowledge at the disposal of the person doing the suffering.

    Regards,

    1776

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    • Posted

      Thank you so much for that thorough reply. You put my mind at ease a bit about the cauda equina. I've done a lot of research, but it's nice to have someone explain it to me from their point of view.

      My left side has always given me more trouble that my right in regards to sciatic and lower back pain. I guess I'm just scared because it keeps getting worse. The thought of any kind of paralysis is terrifying.

      I hope you are getting along well, God bless!

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    • Posted

      Dear M,

      Thankyou.  I appreciate that.  It’s useful to know what a microdiscectomy entails and I have even seen footage taken during one such operation, on Youtube. If pain is really scary and hard to endure, it’s important to have the most effective pain relieving medications and it may be necessary also to see a Pain specialist. It’s helpful to be seen by a medic who can hear properly(!)

      God bless,

      J

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