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Thread: Baclofen pump FAQ

  1. #211
    I ~heart~ you, Simon. Thanks for giving me my first laugh of the day!
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  2. #212
    Junior Member
    Join Date
    Sep 2004
    Location
    Seattle, WA , USA
    Posts
    22
    I have had my pump for three years and it still doesn't work! I've had it replaced once already, been up to the highest does possible, and still I have spasms, most specifically clonus so bad that my feet won't stay on the foot rests. Anyone else have this problelm?

    It has been replaced once already (not from malfunction. it had to be moved to accommodate a colostomy). I have had the highest dose possible and it still isn't working. I still have severe clonus, high tone, and some extensor spasms (I am para T10/11 incomplete). I have had the dye tests, pump tests, etc and all show that medication is going where it's supposed to go. No one has a clue why it's not working but I am more than frustrated. Now I'm told I can't get the damned thing taken out because I couldn't possibly take enough oral meds to compensate. Any ideas?
    Last edited by SCI-Nurse; 01-28-2010 at 10:27 AM.

  3. #213
    It is possible that connective tissue has grown around the tip of the catheter, which may not interfere with a dye test, but still keep the drug from going where it needs to go. You may want to consult with a different physician with more experience with the pump. You can get a list of physicians with this type of experience from Medtronics. It may be that you need a different drug concentration or mix of drugs in your pump as well.

    If you are getting no benefit from the drug, it can be turned off, and you can be started on oral drugs. Since you say it is not working anyway, then I don't understand the statement that you could not take enough oral drug to make up the difference. How much baclofen is your pump currently set for daily?

    (KLD)

  4. #214
    Moderator jody's Avatar
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    it is being suggested to me. I am on a very low dose of baclofen. 10 mg twice a day, and it is working well for the spasticity without making it difficult to keep tone and strength. I am not always able to keep oral meds down, and need pain meds round the clock. right now I am using the duragesic patch, and have been for eight years, so it is more for changing to dilaudid. I don't want to take more baclofen than I need to, so am wondering if it is feasible for that tiny amount that is working for me. I do get ad If I have not pain control, and use a small amount of clonadine for both ad and the withrawal symptoms from the fentinyl patch. I am due to see a specialist soon about this suggestion of the pump. I guess it just really scares me to have my spinal cord punctured. I have a friend with M.S who has had the pump, and also my brother in law who has sci. The brother in law says it is not worth it since like his they can become unplugged, (The catheter) and either not work or leak. My friend with M.S says it has been good except they cant raise the dose any higher, and he has over the years steadily need to increase the dose due to tolerance. more so than when he took baclofen orally.
    My questions are, has the design improved as far as leaking and the catheter coming loose? and is it more common to build a tolerence to the baclofen via pump vs orally? same for the dilaudid vs the fentanyl. can a tiny dose of baclofen be admistered via the pump? Part of the suggestion for getting it has to do with the safety and dispensing of the fentanyl vs dilaudid and also my problem with taking oral meds. I have done a little reasearch on cost too. it will be a grand a month for the pump, which is a lot more than what insurence pays now for what I am getting. Is dilaudid via the pump safer than the duragesic patch? I have a feeling the doc gets something out of prescribing the pump. does he?

  5. #215
    Hi Jody.

    I have baclofen pump from 5 years. i m on higher dose and it is really helping me lot.

    Oral tablets are not that effective in compare to pump. oral tabs travels whole body and then reaches spinal cord affecting liver. with oral tabs, i faced severe constipation. pump medicine reaches spinal site directly which is best.

  6. #216

    New pump

    Hi,
    I just had a baclofen pump installed Monday 4-26, and on Tuesday the doctors increased the dosage to 320 (?), but I developed extreme dizziness and vomited for 22 hours till the set it back to 240. I am now home with it set at 220 and not doing well. I'm actually worse off then before I had it implanted? I took flexirill and pain pills before and had some good days, but was always haunted by spasms and pain, so I decided to go for the pump. I had the trial 2 yrs back and it worked really well. I'm now wondering if I did the right thing? Has anyone had similar experiences with the dizziness from higher doses? Will I be able to increase the dosage a little at a time and avoid it? I know I need more since now my spasms are much worse, especially in my neck (my injury was at c5-c6 with fusion posterior and anterior). My legs now move so slowly but I can say that there isn't much spasm in those muscles, but the neck, back and sometimes arm spasms are too great. I know it's too early to tell, but is there hope for me with this pump?

    Thanks to all for any help or advice I receive. I'd like to hear some good news. Bill

    PS - I'm not familiar to this site, and I'm not sure how to post a new thread? Sorry if I've done this wrong.

  7. #217
    Bill, you did jut fine with where you posted.

    I'm sorry you're feeling so sick from the pump. I'm also kind of shocked that your doc started you on such a high dose, and then tried to give you a 30 percent bump up after just one day. Your bad reaction, I'd say, is definitely a bad reaction to having too much baclofen started in you at once.

    The maximum increase recommended at one time is no more than 15 percent, but many docs usually stick to increases of 10 percent at a time, with a space of at least a few days-week between increases.

    Do you know what dose your test was at? That's usually the level where your pump is started. Starting you at 240 then taking you to 320 the next day seems really high. I was tested at 50 and my pump started there -- and I ended up being unable to move my right leg at all. We turned it off for 12 hours or so, got my leg back, then reset it to 25. I'm now at 760, but my increases have come 10 percent at a time.

    I also stayed on some of my oral meds for a time after starting the pump so I didn't suffer rebound spasticity from stopping them too abruptly. As your doc if that might be what's going with your back and arms.

    BTW, where is the tip of your catheter? That will also determine if/how your upper body is affected. Mine is low due to changes in my SC at higher levels that prevent the cath from going in higher. As a result, I still need some oral meds (zanaflex) for spasm in my arms/upper body.

    Best wishes.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  8. #218
    WE start everyone at 99 mcg and increase 10% -20%.
    cwo

  9. #219
    Hi Bill,

    Dizziness, Vomit , getting sleep are initial symptoms which will last for some days as body needs lil time to get adjusted with medicine. u don't worry. Pump have helped me a lot ! a lot ! give time and you will be okay in few days. your spasms will vanish and you will feel much lighter. increase dose after your body get adjusted. and increase only if its required.

    And """DON'T EVER miss the REFILL DATE ever. Reach doctor 1 week earlier ""

  10. #220
    Junior Member
    Join Date
    May 2010
    Location
    central louisiana
    Posts
    4
    Pump or no pump that is the question. Recent sci feb. 09 due to staff infection on cord. diagnosed as c-4 but regained trmendous amount back. have serious leg spasms. Question is:
    1. How much is refills?
    2. Does it effect anything sexually?
    3. How long is hospital stay?

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