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Thread: CES? Or???

  1. #1
    Member Draggin' Lady's Avatar
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    Question CES? Or???

    Is there anything that has the same symptoms as cauda equina syndrome but doesn't show up on x-rays?
    Last edited by Draggin' Lady; 02-10-2010 at 09:37 PM.

  2. #2
    sciatica?

  3. #3
    Member Draggin' Lady's Avatar
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    Ha! after months of tests (I think I've had every body part scanned from head to navel and then some) my neuro/family doc/ortho surgeon "think" they have an idea! (They're not telling until I have an MRI of the cervical spine, which the PA is trying to get authorized and scheduled asap). About four weeks ago I spent an afternoon in the ER with very scary (to me and to hubby) neurological-like symptoms in addition to the CES-like symptoms I've had since before the L4/5 posterior lumbar interbody fusion (PLIF) and fixation in Jan 2009. Symptoms included an extremely stiff and immobile neck/shoulders, the most wickedly searing head pain I've felt in my life, a "tic" from my neck down each arm clear to the fingertips that was constantly repetetive, weak or no grip (both hands), numbness and extreme weakness in both legs, and very very sleepy. I managed also to "lose" two hours of time to the point where I don't remember if I was asleep or what. Oh, and the (not so) lovely bowel and bladder problems....retaining & leaking urine, a bowel that thinks its on vacation half the time (can't make up its mind whether its coming or going), and the question in the back of my mind, "when do I start buying Depends?"

    Went to ER and they did CT c-spine and dx was moderate stenosis C5/C6 (on top of the already-diagnosed spondylosis at same location). My baclofen dosage was increased to up to 80mg per day PRN, and it took about 2 weeks before I felt "less abnormal" than that day. I've continued to have episodes of the extreme neck stiffness with very distended trap muscles/tendons. My legs remain weak and achy, with recurring numbness or "icy" feeling depending on the state of my neck. I don't get the urge to void until my bladder is so full that I break out in goosebumps or get a headache & sweats. My bowel lets me know I have to "go" but then it is a 30-minute job with straining to complete the job. I then spend the rest of the day telling my rectum to "shut up" literally. Sometimes I have days where it feels like I'm sitting on a very active sphincter, I don't drive when symptoms are bad because I can't grip the steering wheel, and turn my neck enough to back up or change lanes, and the past few days I've had a problem getting my AFO'd left leg into the vehicle without having to pick it up at the knee and drag it on board (Hence, my username, "Draggin' Lady.) Even being a passenger makes the neck pain and stiffness flare up to the point where I don't even wish to travel any distance at all to see friends or family or do favorite things together with hubby. Heck, half the time I can't even lift a saucepan or spatula to hold them long enough to even cook a quick supper.

    So, I am wondering what the doc could be coming up with? I also have returning carpal tunnel (bilateral) and left cubital tunnel symptoms (EMG confirms). Surgery has been mentioned, but Neuro feels it's not necessary at this stage. He's an amiable ortho guy, head of Ortho Dept and Head of Surgery at my hospital of choice, and very knowledgeable in SCI and specializes in C-spine disorders.

    I am very curious as to what he comes up with. I hope to have the MRI within the next week or so.

    Any guesses from those more experienced than I?? Doc did say today I had a positive "sign" but I can't remember which one. It started with an "S". That's my typical memory too. I even forgot the dog's name yesterday for about 2 minutes when calling her to come inside from the yard. Sheesh.

  4. #4
    Dragin Lady, I too have , through deduction, transverse myelitis. I'm wondering what damage your doctor says you have. My doctor says I'm missing some myelion and some nerve damamge. The reason I'm asking is; what is your take on Wise's therapy? Do you have any idea what correction that will have to take place for you to regain some normalcy? Just asking

    thank you
    keeping on

  5. #5
    Member Draggin' Lady's Avatar
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    Hi, Keeping On...
    I just had the MRI done yesterday, and have the next appt on August 31. I hope to know more (alot more) then. I am very curious about dx; if he says "nothing found" then I may just go nutso (in theory). More research has led me to believe it may well be cervical stenotic myelopathy (what we call Wobbler Syndrome in the horse world).

    My lower limb weakness is becoming much more pronounced, as is the arm/hand weakness and numbness/pain throughout all 4 extremities. Now I wish I had a KAFO instead of the AFO on the left. My eating habits and digestion habits have changed, and I've found that I can no longer eat 3 meals a day, and even then, they were light meals. Now it's a bit of this and that, and maybe one meal a day (I'm still eating well, just not near as much. Weight has stayed the same so far, which I'd rather I lost some poundage as I weigh 235 lbs).

    We did a road trip to a family event this past weekend and it was pure torture (the road, not the event!) I have a hard time describing the kind of sensations, pain, burning, headaches and spasms/stiffness/rigidity that develop whenever I ride in any vehicle. Even my lower spine is screaming. I've gotten to where I break out in a sweat or goosebumps (usually sweat) before my bowels or bladder can get my attention, and that's not pretty either.

    I have a great doc, so I'm sure he'll put his finger on it.

    I haven't studied Wise's therapy yet. I have alot of research still to do and his info is at the top of the list. Normalcy? Hmm....it hasn't been "normal" for a long time, and it's getting less normal every day. I've been clumsy with hands and feet for over 40 years, so I wouldn't be surprised if it was something congenital or something that has been brewing for a while. I'll post something as soon as I know. I'm going to need prayers to keep from becoming impatient for the next 13 days.

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