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Thread: Bacolofen Pump for Cerebral Palsy

  1. #1

    Bacolofen Pump for Cerebral Palsy

    Hey everyone,

    I took a long hiatus so this post might be a bit long and I apologize.

    In January 2017, I had a bunion repair done on both feet as well as hardware placed in the right big toe (screw), and some tendon work done. The objective was to make my feet more anatomically correct in order to reduce discomfort and increase tolerance for standing .

    I was in casts for seven weeks following surgery; therefore, when the casts were removed i had lost A LOT of function and was struggling with tone. I was also having bladder control issues and recurrent UTIs. After a day where my tone was way up and I was struggling to sit, lay down, transfer, anything, I landed in the ER. I was held overnight and met with the neurologist the next morning . From there, I was put on Baclofen;10mgs in the morning, 10 in the afternoon, 10 in the evening, and 20 at night.

    The neurologist said she didn't notice a huge difference with the Baclofen, but my phsyiatrist said it has to be helping. I get Botox in my adductors every three months, but we are looking into a Baclofen pump. Is it more effect than oral Baclofen? Is the surgery invasive?

    I do look at the sticky on Bacolfen Pumps, but I'm hoping some with CP will weigh in.

  2. #2
    Yes it is goes in to the intrathecal space- that has your cerebrospinal fluids that circulated around your brain and spinal cord. However, you must be at the max dose of baclofen or be unable to tolerate side effects. It is surgery and requires refills every couple of months and s replacement of the pump due to end of life of battery. So it can be a lifesaver for severe spasticity. 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
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    You are so far from maximum dosage of oral baclofen it is just silly to have someone recommend a pump. Pumps have a lot of downside. Get the dosage cranked up to find out if it gives you more relief.

  4. #4
    I don't think the dosage is the issue here. As far as I understand, there's two reasons for the pump over oral medication.

    1. We are hoping that the medication will be more effective when delivered directly to the spinal cord.
    2. I struggle to take the medication on schedule each day. I am on a lot of meds; therefore, they are blister packed. I don't like carrying all the meds around if I am working, at school, or whatever the case may be. Even when I carry just the Baclofen around, it is not always practical or possible to stop and take meds at an exact time.
    3. Lastly, we are hoping with the pump, it might mean I no longer need Botox shots. I understand they work in different ways, this is just what my PM & R doc has expressed as an upside.

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