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Thread: Neuro visit and Intrathecal Baclofen Pump

  1. #1
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    Default Neuro visit and Intrathecal Baclofen Pump

    The doctor agreed with me that I am getting worse with spasticity and that the high doses of Baclofen cause such miserable size effects and the drugs managing the side effects have side effects of their own.

    So, I am going to try the pump. Will take time to get this lined up. They test you, and if you pass, they do outpatient surgery where they install a small pump in your abdomen, it then has a tube that goes into your spinal cord . They can put necessary Baclofen dose into the spinal canal, thereby not getting all the systemic side effects by taking pills. Plus, you can get higher doses of Baclofen that way, theoretically less spasticity and less spasms.

    Its a bit scary, but my life has become so limited and impaired and filled with pain and fear, that I am willing to try it. Many SPS patients go this route.

    You then have to refill the pump every 5 weeks to 3 months depending on your needs. Its dangerous to run out, you can die or have seizures, so you always keep pills on you just in case, and take the Baclofen orally. The device lasts 5 to 7 years.

    It has come to this.

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  3. #2
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    Sunshine, I hate for you that it has come to this, but I am also hopeful that overall it will be beneficial. Maybe without some of the side effects of some of the other drugs you might not only feel better but also be able to do more. I truly hope so. I have been so impressed with all that you are already doing, as far as your step count, swimming and cooking.
    Last edited by Virginia; 10-28-2020 at 11:51 AM.
    Virginia

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  5. #3
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    It’s a big step, Sunshine, but it sounds like the right step. I know you are very well informed.

    Let us know when you are scheduled.

    Best to you,
    ANN
    There comes a time when silence is betrayal.- MLK

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  7. #4
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    Sounds as if this might mean an improvement in your life, Sunshine. I've noticed that there are a lot of people who have a baclofen pump installed, and I've been noticing that for years--so the medical providers must have a fair amount of experience and know-how about it. It sounds like an amazing device. Keeping my fingers crossed for this to work out for you!
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  9. #5
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    I posted on a closed SPS Facebook page about the pump. The horror stories came out of course. But they will give me good questions to be armed with when I am evaluated.

    For example, having osteoporosis, I wonder if they will be able to effectively anchor the lead on the vertebra.

    Another patient had problems fighting infection and promptly got infection at the site of the surgery right after, and spiraled out o f control.

    The successes, may not be posting, as they no longer are on the FB page looking for help and support, I figure.

    Someone also mentioned that Klonopin has a longer half life than Ativan, a med I use to help control spasticity. I just PMd my neuro about that possibility while I await a pump evaluation.

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  11. #6
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    A good friend has had a baclofen pump for about 15 years and it has been just fine.

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  13. #7
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    IT might take time to get in to the the doc. And there are reasons I may not be a candidate . Waiting, waiting.

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