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Thread: Baclofen pump FAQ

  1. #91
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    Quote Originally Posted by thehipcrip View Post
    all this is PFA squared math (the numbers were Pulled From Air and if they work out, it will be Pretty F**king Amazing).
    I love that!

    So you have had to keep increasing the pump a little bit over the years? Mine has been stable for about a year, and I was hoping it would stick.

    Quote Originally Posted by rdf View Post

    I recently had a refill, and things went to hell. I went into withdrawals.
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    I may have broken my tibia or fibula, which I didn't even notice until after all this had happened. There's a big bruise and it's a little hard to the touch on my lower leg. I'm going in for an x-ray this week. This may be my problem, least I hope it is. I hope to get back to at least 360mcg per day. In the ER, my wbc count was really elevated. They said it was because my whole body was constantly flexing and extending every half second. They were worried my muscle tissue was being damaged.

    Anyone know if a fractured lower leg would elevate the wbc count? Anyway, I hope your bolus guesses are close, or at least in the ballpark. Thanks hipCripgirl.
    The bolus can be delivered either as an extra amount over a certain amount of time, or an extra amount all at once. I have had it done both ways. The all at once method works best for me. In both cases. since it is the amount of med (volume) not the concentration, and the catheter is finate, the bolus is pretty instantaneous. Compare it to turning up the hose. If the pump is turned up, it is pumping out the meds at a faster rate, so they will also come out of the end of the catheter at the faster rate as well.

    The only time you have to wait for what is in the catheter to get to the end, is when they change the concentration when they fill the pump. That must be what happened with you ... when they refilled me with a new concentration, they had to do some calculations, to determine x amount of meds left in the catheter, needing to continue at the old rate, and then the NEW higher concentration, would give me the same amount of medication at a lower rate. Sounds like that didn;t work for you, and until the old meds cleared the cath, they were getting delivered at the new, slower rate?

    As far as the broken leg, don;t know about the white blood count, but it would send my spasticity through the roof. WHen I tore my acl, they had to increase my pump for a bit.
    T7-8 since Feb 2005

  2. #92
    Quote Originally Posted by sjean423 View Post
    So you have had to keep increasing the pump a little bit over the years? Mine has been stable for about a year, and I was hoping it would stick.
    Yes, I have had to keep upping my dose, but that may not be something those who have a traumatic SCI will have to do as often as I do. My SC damage is not from an accident, it all stems from a cancerous SC tumor and the cysts that formed when that tumor bled.

    Because of three surgeries to remove the tumor plus followup radiation therapy, there is very little left of my SC between C2 and T4 -- it's barely visible in some places on an MRI -- and what little that is left is situated to the very posterior of a 90 degree kyphosis (i.e. pressed against the back of the vertebrae) and tethered to the dura in multiple places.

    Between the tethering, position, weakened nature of the remaining tissue post-radiation, and the natural progression of aging, the damage to the little bit of cord that I have left is progressive. As a result, I need to have my pump dose adjusted fairly frequently to compensate for degeneration that occurs over time. I've actually been stable for over a year, but have just gone through another decline that has, among other things, made the spasticity and tone throughout my body worse.

    Hopefully that isn't TMI !

  3. #93
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    No that makes sense. Your cord is still changing, so the baclifen dose has to change over time. Hopefully, since mine is stable, the dose should stay stable, no I have reached a point it is working. (at least if it isn;t cold, or stormy, or I have injured something, have a uti, its a full moon, or a tuesday, lol)
    T7-8 since Feb 2005

  4. #94
    Senior Member McDuff's Avatar
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    We've been playing with mine a lot this past 9 months or so, my spasms and tone have climbed way up.

    Now we have it doing a double shot every 2hrs. Even though my flouro showed no cath problems, she thought maybe there is a micro hole or something that doesn't show, and doing a DS would push more med past the possible hole and get me more relief.

    I'm at like 860mics/day currently and not where I need to be yet.
    "a T10, who'd Rather be ridin'; than rollin'"

  5. #95
    hi there was one question i've been meaning to ask....is it normal for a the catheter to be placed around c4-5 level? when another doctor was checking to see where the tip of the catheter ended it was in that area. just wondering could that be the reason why it's not helping as much? also i've been having a achy pain in the neck and not sure if it's from that or something else. thanks for the help i love this site!!! lots of info on EVERYTHING!

  6. #96
    bailey, your cath tip is that high? Lucky you! The baclofen will affect the nerves at the cath tip level and below -- with yours being placed so high, you should get relief for most of your body. If anything, that should make your pump more effective than those of us whose catheters are lower.

    The surgeon who put in my last pump told me at that time (2006), his team was just starting to place intrathecal catheters in the upper T/lower C area. My understanding is that prior to that time, placement was more typically done in the lower T/Lumbar region.

    Tell your doc right away about any neck pain you have -- better to get it checked to make sure it's not your catheter than risk any damage to you or the pump.

    --THC

  7. #97
    yes i'm waiting for my doctor to call me back. i only need relief in from my stomach down and i'm only getting about half that. so i wasn't sure if the catheter tip was too high making the medication in the lower area not as strong? just a thought.

  8. #98
    Still looking for my magic number. The morning after I was bumped up to 311, I was noticeably more flexible. Not quite where I want to be but getting close. It was nice. But then three days later, my spasticity suddenly returned and I'm back to where I was. I can see why this process takes so long.

  9. #99
    zero how long have you had your pump in?

  10. #100
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    Quote Originally Posted by Zero View Post
    Still looking for my magic number. The morning after I was bumped up to 311, I was noticeably more flexible. Not quite where I want to be but getting close. It was nice. But then three days later, my spasticity suddenly returned and I'm back to where I was. I can see why this process takes so long.
    I really worried about that at first, how it would seem like I found the right setting, then a few days later creep up. But I understand it is typical. It took me almost a year to get it right. After a while, the time that it was "right" lasted llonger, then longer again. (Ie a few weeks, then even a few months). Mine hasn;t been changed now in over 9 months, and is still fine.

    I will get there.

    Then too, the whole thing, finding the "right" number gets thrown for a loop if something happens, to cause your spasticity to increase.. Ie, a uti or ingrown toenail will make your spasticity increase, even with the pump. So you really have to wait til that passes, before you can continue to tweak the pump.
    T7-8 since Feb 2005

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