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Thread: I have a couple Questions for (incomplete) quads with a Baclofen pump

  1. #1

    I have a couple Questions for (incomplete) quads with a Baclofen pump

    1. At what point did the pump begin to be considered? and how soon after injury did you get the pump

    2. did the pump affect your upper extremities as well?

    3. did hand function improve after the pump? my hand function is severely limited and I kind of blame my tight clenched hands do to tone

    4. if walking, did your walking improve?

  2. #2
    the baclofen pump will not affect your upper extremities , or if so very little. it is for the lower extremities.

    CWO
    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.

  3. #3
    hm, I thought if the catheter was placed in the cervical region it would affect upper extremities as well.

  4. #4
    Senior Member zagam's Avatar
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    The catheter has to be placed in the loose bag of nerves (cauda equina) in the lumbar region.

  5. #5
    Quote Originally Posted by zagam View Post
    The catheter has to be placed in the loose bag of nerves (cauda equina) in the lumbar region.
    That is not correct. The catheter tip can be placed anyplace along the spinal cord, but most physician do not place it in the cervical region (where it would help arm spasticity) because it can negatively effect respiratory muscles.

    (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.

  6. #6
    Then is there any hope in reducing hand spactisity and other upper body spasticity, i'm alreadyon max doses of baclofen and dantrolene

  7. #7
    Senior Member zagam's Avatar
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    Inflammatory mass

    An inflammatory mass that can result in serious neurological impairment. If the catheter is placed in the loose bag of nerves then there is more room. More of an issue with opioids than Baclofen.

    If placed high it may stop you breathing!



  8. #8
    Senior Member
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    I'm C3 incomplete, 7 years.
    I was on max dose of Baclofen for 3+ years and was considering pump. As per my primary Neurologist that was the next step, no other option.
    I tried to write my spasms stories but deleted because it read like a boring novel, will just say horrible.
    I experimented with lowering my daily oral Baclofen dose GRADUALLY. I saw little negative effects and felt stronger. It seemed like oral Baclofen mostly made me weak and sleepy.
    Year 4, on small dose oral Baclofen, still spazzing. I found another Neurologist, told him my story, asked if there were other options.
    He prescribed Cyclobenzaprine 10mg 1-3 x daily as needed for spasms(started with 3x day, now most days I take only 1, hard day of activity = 2) and Clonazepam 1mg x 2 at bedtime (these make me sleepy and x2 made me slow to wake up so most nights I take only 1). Stopped Baclofen when I started these meds.
    Year 7. These days, my left leg is my only part that has visible spaz (less and shorter time) and only when I walk or stand too long, rarely when resting. My left leg is about 30% weaker than right so I contribute spasms due to pushing it to hard.
    I now can walk alone, slowly with 2 quad canes for short distance with cautious confidence. Left arm, hand, and 2 fingers will not fully extend. I stretch them out a little each day to retain what I have. Very little to no spasms in either arms/hands now. A lot less muscle pain, some days none. Shoulder joints are toast (MC racing) but that's skeletal.
    I AM NOT A DOCTOR AND I AM NOT SAYING THIS IS WHAT YOU SHOULD DO. I AM ONLY RESPONSIBLE FOR MY ACTIONS, NOT YOURS OR ANY OTHER PERSONS.
    ASK YOUR DOCTOR!
    Every case is different, this is just my story.

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