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Decline in neurogenic symptoms despite spine being stable

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kara1977
kara1977

CES was spontaneously occurring 3/3/13. Had emergency surgery and 2 revisions in 1st year. I'm officially a failed back surgery patient and permanently disabled, in chronic pain, nerve damage. My bladder seemed to rebound ok. I had retention issues. Had an MRI in preparation for my disability hearing and because I had come off a substantial amount of narcotic pain meds doc wanted to make sure it was just unmasked pain and not new issues surfacing. Things seemed stable. So, over the past month I've had significant decline in nerve involvement. More neuropathy issues in my legs and feet, cramping, pains, sensations of burning, lightning bolts, bugs crawling on me. What's been most concerning is deadening of sensation in my lady bits (I never had saddle anesthesia) and a big time return of neurogenic bladder. I returned to urogynecology, she was at a loss for explanation. I addressed it with pain management at my last appointment (which was with the NP, next month is with MD, will readdress again). I go see my primary care on Thursday and have a feeling she might send me to neurology. I'm in zero rush to return to a surgeon as the a**hole who did surgeries 2 and 3 made a nice chunk of change, sealed the deal on my disability and when I showed up for my 3 monothing post open in terrible spine pain with a DVT in my calf he told me he did the best job he could and it was all in my head. Nice...

1 like, 3 replies

3 Replies

  • fi03229
    fi03229 kara1977

    Posted

    Hi,

    Your situation sounds similar to me. I had CES in 2013 due to a large L5/S1 herniated disk and the surgery was delayed for almost 3 weeks due to incompetent NHS doctors despite me repeatedly going back to A&E and telling them that I had CES. To cut a long story short I was left with a range of neurological problems which over the next two years improved. However suddenly in June this year the CES symptoms returned with the most severe mechanical back pain (60%) more than normal and major problems with walking.

    I went back to A&E and several MRIs later (including neck- another place which can cause CES symptoms) the doctors had and still don't have no explanation for why I am experiencing the return of CES symptoms as no obstruction near the caudia Equina. I am in the process of asking for x-ray's to establish if there is instability in spine as the disk is almost gone and something in my lower move back in place before the MRI. I would check whether a repeat MRI plus x-ray's is needed and due to the approaching holidays ask before your appointment on Thursday.  I would speak directly to the neurosurgeons about this issue.

    I hope you get some answers soon as I know how distressing it can be when the doctors have no clue. To give encouragement my symptoms have stabilised again but a loss what caused it in the first place. 

    Take care

  • fi03229
    fi03229 kara1977

    Posted

    I am sorry, I should have explaned before that sometimes MRIs don't always pick up instability in the spine as taken when lying flat. The reason for the x-rays is that they can check for narrowing of the spine with you standing and bending. 

    I this helps? 

    • kara1977
      kara1977 fi03229

      Posted

      I though I got a raw deal until I spent time on the CES Facebook page. Folks in Europe (England and Ireland in particular) fared worst thanks to your socialized healthcare. Like I said, I'm so done dealing with surgeons. They're all pompous pr*cks after the $, leave you in worse shape then tell you it's in your head, all set. The whole experience left me with a second set of PTSD that I now have to take meds for because I began having nightmares of watching myself being operated on, of being right back in the nightmare of 2013/2014 of being labeled an addict or having a somatization disorder (fancy way of calling you a hypochondriac) this was new docs I was encountering trying to get answers and a grip on my diagnoses and situation and what had happened to my life. Fortunately my primary care (or GP as you call them in UK), psychiatry (primary care and psychiatrist I'd been seeing for 6 years before CES) and pain management knew I wasn't full of sh*t. I'm at a place now, after being thoroughly traumatized, where I'm totally hesitant to let in any new doctors. However I implicitly trust my primary care. I think the decline in neurogenic symptoms has to do with the peripheral neuropathy doing what it does best as a disease process. If she suggests consulting neurology I will. The problem is I've already tried and struck out on all the meds they use for nerve damage (lyrica, cymbalta, gabapentin, gralise). I experienced ineffectiveness or intolerable side effects. This whole experience has been quite the cosmic cruel joke. My God!
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