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Arachnoiditis Message Board

  • need some advice

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    Old 03-12-2015, 05:58 PM   #1
    ceb5
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    need some advice

    Over the years I have had multiple fusions in lower back, a tumor removed from the cord not to mention chronic pain in right foot from the sc tumor. Last year I went in to find out why I was having so much lower back pain and weakness in the legs. The results showed that there was persistent findings of partial clumping and irregularity and peripheralization of the cauda equine nerve roots through the upper to mid sacral canal. The findings adjacent to the conus therefore are very likely related to clumped nerve roots in the setting of arachnoiditis. It also had mentioned sacral arachnoiditis. I showed these findings to my pm Doctor and he suggested Caudal Epidural Steroid Injection. About a week or 2 after the injection I stopped having Bowel Movements, unable to walkvery far due to weakness in legs, my lower legs are very painful when trying to walk, have muscle spasms in my legs. After a 6 week period and a lot of enemas I started having BMs again but the stool stays soft, have uncontrollable gas and I now have trouble not being able to hold the stool in. I feel that the pm Doc has done me a disservice with the injections and I wonder if this will get better, worse or stay the same?

     
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    Old 03-12-2015, 06:44 PM   #2
    gmak
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    Re: need some advice

    Hi ceb, Adhesive Arachnoiditis is a condition that causes the cauda equina/ spinal nerves to clump together and adhere with scar tissue together and to the inside of the dura and peripheral clumping means the nerve roots are adhering to the sides of the dura and instead of cauda equina nerves hanging down the middle of the thecal sac they start lining up adhered to sides of the dura like slash marks and numbers on a wristwatch. I have lumbosacral AA starting at conus and down to caudal area. I saw 3 spine NS's and was told to avoid any invasive spine procedures because it can cause it to flare, pain get worse. Many of us have cauda equina syndrome as well including myself and invasive spine procedures I. E. Lumbar punctures/ spinal taps, Epidural steroid injs, surgery are my drs said are not recommended. CES can be a surgical emergency or can become chronic with aa. CES Symptoms include sex or bladder or bowel problems and neuropathy in legs and feet and ESI's, rf ablations, myelograms, etc can cause aa to flare. I have had trouble as do many patients finding a dr that really does understand AA and I've had pm drs recommend injs to me too but eventually found a pm dr that does not do or recommend injections. Have you seen a practice limited to spines only neurosurgeon? It can be hard to find a dr knowledgable about arach but I had better luck with spine NSs and physiatrist than with a pain mgmt anesthesiologist. I hope that what you are experiencing is just a flare and it will subside soon. For me the pain and Ces symptoms lessen a bit after flare is over but just a little.

    Last edited by gmak; 03-12-2015 at 06:52 PM.

     
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