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Thread: Why am I getting worse?!!

  1. #1

    Why am I getting worse?!!

    I am L4-L5 incomplete, 9yrs.
    I was told I?d never walk unassisted. I lost my career, my husband, family and home because of the accident. I never accepted that I wasn?t going to heal, I can?t be in any position for more than 2-3mins before the pain is too much.
    It took 5 yrs to walk & I found I can bartend and serve with little pain. This year I was working full time, I re-learned how to ride my horse & did my first jumper show in June. I learned to hide my pain & disability so most people can?t tell there?s anything wrong.
    What happened??? I?m loosing everything!! Bladder, bowels, walking & out of control pain. When I get tired my legs get shaky & feel like I just ran a marathon(this is new) They won?t hold my weight & I'm completely dependant on my new partner.
    The drs keep telling me it?s prob just scar tissue so there?s nothing they can do. I have a spinal cord stimulator so an MRI is out & CT doesn?t show what they want to see.
    I met my partner after I was walking & working. He's been great, but so was my husband. Until he wasn?t.
    How much worse am I going to get?? Will I be able to go back to work? How do I control butt snot...esp during sex? I feel like I?m new to this again.

  2. #2
    Possibly a syrnx.
    Canadian bacon is a fraud !!!!

  3. #3
    I thought the guidelines changed and now they can do MRIs with some types of stimulators?

    it does sound like a syrinx or tethering (scar tissue) or possibly both, but you would imaging to know for sure. I am pretty sure it has to be an MRI.

    If it is either of those things, you may want to explore treatment ASAP, bc function you lose rarely returns.

  4. #4
    Ponyjumper, please complete your profile. It makes it much easier to respond to your questions and comments. Thanks!

    The two most common causes of deterioration in sensation and function long term after SCI are either a syrinx (uncommon in the lumbar cord) or myelomalacia. What is your neurologist saying they think is happening? CT can be used for both, although not as good as an MRI. Have they ruled out spinal root compression (peripheral nerve)? This can be done with an EMG or SSEP.

    You may want to post your question about "butt snot" separately as it is likely not related to your neurologic change, but with how you do your bowel care.

    (KLD)
    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.

  5. #5
    I don't know about you, but a horse was hard on my back. Could you have compressed it riding? It doesn't say how old you are, but I've seen ladies have problems when they entered menopause.

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