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Thread: Help on diagnosis

  1. #1

    Help on diagnosis

    Not sure if this is the right place, but any help/advice much appreciated.

    I had what turned out to be a massive central/right disc herniation at L5S1 last year. Insiduous in onset over a few weeks but I think it was related back to a sporting injury, 6 weeks of conservative treatment did no good, and then it progressed quite quickly to severe leg weakness and bowel and bladder difficulties. Neurosurgeon denied that b&b problems were related to back, but booked me in for microdiscectomy a couple of weeks later. Surgery uneventful, good pain relief but leg and b&b symptoms the same. 6 weeks later he pronounced after 2 min. consult that he had fixed everything (turned out that it was an old calcified herniation + new herniation, pretty jammed up but surgeon confident he had fixed it all) and that I just needed 'retraining'. I was fit and healthy before, and have worked my butt of, physio, fitness, weight loss, exercises etc. but a year on, I have no movement at all below the knee (0/5 for all muscles) , weakness in the hamstring and gluts in my right leg. I struggle to urinate, but feel the need to go all the time and leak a bit. I also have moderate lower back pain centred over the spine, severe shooting pains down to the bottom of the spine and a feelng of tightness/pressure over the spine. Tingling/crawling sensation down the inner thighs and burning toes are also constant reminders that everything is not as it should be.

    I wear an AFO and walk with a bad limp as i find it hard to coordinate my leg movement. I don't use any other aids, but feel that my walking and leg weakness and balance on my feet has actually got worse. Despite this I cycle every day to retain fitness and am actually fitter than I have ever been. I pushed for some sort of diagnosis and finally got a nerve conductance test which confirmed that the muscles were denervated from the lumbar area - diagnosis was L4-S1 severe chronic radiculapathy with poor prognosis for recovery. >4cm of wasting of the calf. We did not discuss the other b&b problems at the time. Since then I have had a gyno consult for other issues and the bladder issues became apparent. A urodynamics test showed that my bladder spasms uncontrollably at about 250mL full, but I can only empty about 100ML of that, leave 100-150 mL of residual volume. I have a follow up appointment in about 2 months were I guess they will explian what this all means (is it normal?). I also have no functioning pelvic floor muscles. I find this quite distressing and I still work full-time which can be challenging. Not going into details I also an embarrasingly unaware of air passage through the back end (if you get my drift) - again very challenging in meetings, conferences etc so increasingly I find myself making excuses not to attend these sort of things.

    Sorry for all the background, but my question is whether this is actually consistent with the original L5/S1 disc herniation or whether there may be something else going on. I read a lot of people dealing with chronic pain from disc herniations, but not the sort of leg paralysis and coordination problems. Is it normal for this sort of problem to actually get worse and not better? My doctor is not very systematic and just seems to look at each problem in isolation, and I in turn am not particulary pushy. I had the original op. privately and have no coordinated care since (just take myself off to the physio or doctor when things get unbearable). I didn't think a disc hernation would result in all these problems and I would have expected to be improving not getting worse and am starting to wonder whether I could have some other neurological disorder contributing to my condition?
    Last edited by beccie; 11-23-2008 at 10:43 AM.

  2. #2
    Herniated discs are not to be taken lightly. I have severe degenerative disc disease and have had a spinal cord injury due to an area that calcified then broke. Hopefully, the RN will chime in with some good advice.
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

  3. #3
    The L5-S1 herniation may have caused Cauda Equina Syndrome. When symptoms like yours appear initially, it's an emergency and often requires urgent surgical decompression.

    Do you live in the US? If so, a combination of pain management, GYN, Urology and PM&R are good specialists to see.

  4. #4
    Tks for the info. I did some reading on CES and it does fit in many ways but it hasn't been mentioned by any doctor I have seen and googling 'severe chronic radiculapathy' doesn't give me much info to go on. Not that I want a label, but it would be nice to know what I am dealing with.

    Another dumb question - I've noticed that the nails on my foot have virtually stopped growing and are getting really thick and ridged, and my foot appears to be getting shorter - tends to go purple and blotchy a lot. At the same time as my lower leg is generally getting much thinner, my lower achilles appears to be swollen, thick and quite hard. Is this all a normal consequence of leg weakness and should I be worrying about it at all?

  5. #5
    Senior Member skippy13's Avatar
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    Sometimes you have to accept that the damage does not necessarily improve. nerve damage is hard to overcome. If you feel that you are worsening you need to be more assertive in your care. (I need to take my own advice and do the same) Some of the damage may take longer to manifest itself even though the insult to the nerves occured some time ago and the pressure has been relieved. Most likely the B&B issues are indeed related to your disc problem. Mine were ignored too. I know, there are so many other problems to address at one time, that it is hard to get to them all in an appointment. But your comfort and dignity are important. You need to find a doctor that will take the time to address all of your concerns. I wish you the best.

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