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CES Symptoms. Looking for advice on how to be proactive about diagnosis and treatment

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    CES Symptoms. Looking for advice on how to be proactive about diagnosis and treatment

    Hello, this is my first post on the forum. I apologize for how lengthy and scattered it is.

    I went to the ER on 03/28 for urinary and bowel dysfunction ( greatly diminished urge to urinate, and/or have a bowel movement), and tingling in the saddle area. About two weeks prior, I developed centralized lower back pain that got better after applying heat and ice, and taking ibuprofen.

    I went to my PCP and told him about my symptoms. He tested my urine for impaction (test was negative), and gave me a prescription for Naxopren and a GERD med, and scheduled me for an MRI of the lumbar spine about two weeks out. At home, I Googled my symptoms and came across Cauda Equina and Conus Medullaris Syndromes which seemed to fit perfectly, except for radicular pain/sciatica. After about a week, I wasn't feeling any better, so I went back in to see him; my biggest concern being bladder and bowel dysfunction. I suggested to him that my symptoms were the result of spinal cord compression, and he agreed and advised me to go to the ER that day.

    At the ER, the doctor who treated me recognized some of the red flag symptoms of CES and ordered a bladder ultrasound, and an MRI of the lumbar spine, both of which turned out normal (I voided completely, although I still had no urge to go, and MRI was "unremarkable" -- I included the MRI write-up at the bottom of the post for reference).
    I was ultimately diagnosed with a UTI and prescribed antibiotics. After finishing the treatment, I went back to my PCP for a follow up, and complained of the same bowel and bladder symptoms. He referred me to urogynecologist for a urodynamics test, and I'm scheduled to see her in about three weeks.

    Because I still worried about the possibility CES and CMS (I still feel discomfort in my lower back and tingling in my saddle area, along with the bladder and bowel symptoms) I decided to ask for a referral to a neurologist, as well. I'm gonna go see my PCP about it on Monday.

    I guess I'm just look for input and suggestions about what questions to ask or what to bring up during my appointments in order to get the most out of them. I have all the paperwork for the ER, a list of all prescribed medications, I'm keeping a voiding diary for the urogyno appointment, and I have a copy of my MRI results, as well as the disc with the scans on it from the hospital to show the neurologist. Any input would be appreciated.

    EXAM: MRI Lumbar Spine W/WO CONTRAST

    CLINICAL INDICATION: Urinary complaints, Evaluate for Cauda Equina

    TECHNIQUE: Sagittal pre and postcontrast T1, T2, STIR, axial pre and postcontrast T1 images of the lumbar spine and axial T2 images of the intervertebral discs were obtained.

    FINDINGS: Normal alignment. Intervertebral disc space heights are maintained. Normal disc signal. Vertebral body heights are maintained.

    Nonpathologic marrow signal, and no abnormal marrow edema or enhancement.

    Conus terminates at L1 level and demonstrates normal caliber and signal. Filum and Cauda Equina appear unremarkable.

    No canal or neural foraminal stenosis.

    Paraspinal space appears unremarkable.

    IMPRESSION: Unremarkable exam.

    Most often CES results from trauma such as a lower lumbar spine fracture or disk rupture. Have you had such an accident? It also usually results in total urinary retention (unable to urinate at all or only by valsalva, leaving a large residual), and possible overflow incontinence, and also results in bowel incontinence with a flaccid anal sphincter. You don't mention what is going on with your bowel. Acutely, most people have to have a catheter inserted into their bladder as they cannot urinate at all.

    Many people with CES also have loss of ankle dorsiflexion and plantarflexion and/or inability to flex the big toe. Have you any problems in this area?

    Your normal MRI appears to rule out cord or cauda equina pathology such as a fracture, disk rupture, or spinal cord or cauda equina tumor.

    You don't mention any other medical or health problems that could cause a peripheral neuropathy resulting in these problems (alcoholism, diabetes, etc.) or if you have been evaluated for other central nervous system diseases that could cause such problems, and I assume the neurologist will be looking at these possibilities as well.

    Of course we cannot make a "diagnosis-by-internet" for a condition like this, nor would it be appropriate for a diagnosis to be made through this site. I will ask Dr. Young to weigh in on this when he has time as well.

    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


      I apologize for the delay in this answer. The symptoms that you describe do not fit with acute cauda equina syndrome, which usually results from trauma and compression of the spinal roots below L1. If there were damage to the spinal roots, as KLD points out, you would have loss of sensation (not tingling), flaccid paralysis of the bladder and bowels with either urinary or fecal retention or incontinence depending on the level, and some leg muscle weakness as well if it involves any of the lumbar or upper sacral roots. You have a normal MRI scan of the lumbar spine with no evidence of vertebral disc herniation and bony configuration. Neither cauda equina syndrome or conus injury are subtle. If you had it, you would know it.

      The question is whether you might have any other cause of compromise of your sacral spinal roots. For example, some people may have excessive fat in their spinal canal. However, such fat would be easily visualizable on MRI and you don't have that. Neuropathy is often a waste basket diagnosis of symptoms that may follow the anatomy of peripheral nerves (which differs from that of sensory and motor loss associated with spinal cord injury) but with ill-defined causes, such as diabetic neuropathy. Diabetic neuropathy, however, seldom presents with a saddle-shape tingling and is not likely in young people who don't have any other symptoms. Alcoholic neuropathy is relatively rare (I don't think that I have ever seen a case) and you would have other problems (such as liver cirrhosis) and neuropathy is seldom the first presenting symptom and almost never only in the distribution of the sacral spinal roots.

      In my opinion, what you have is neither cauda equina syndrome and conus medullary syndrome. I hope that it goes away and does not trouble you again.