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  • #91
    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.

    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

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    • #92
      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 !
      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

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      • #93
        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

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        • #94
          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'"

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          • #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!

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            • #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
              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

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              • #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.

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                • #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.

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

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                    • 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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                      • That creep can be frustrating for sure, zero...but weren't those three days wonderful? Feeling like that almost all the time is the gold at the end of the tweaking rainbow. sjean described that journey perfectly -- as you get closer to that magic number, the "Ahhh" days before that creep sets in will last longer and longer.
                        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

                        Comment


                        • I'm up to over 1400 mcg a day getting several bolus is of over 300 mcg throughout the day. That seems to be the only way to tame my spasms which unfortunately doesn't leave me with a whole lot of tone but any less and my hand won't open, my wrists will spasm, my back will spasm and my right foot wouldn't stop jumping. I'm just about at the max dosage.
                          Here are some pictures for those who are curious what it looks like. This is my old pump that they removed in 2006. I had this in me for five years before the battery died:





                          C-5/6, 7-9-2000
                          Scottsdale, AZ

                          Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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                          • Hello, my name is Lee, and I have cerebral palsy with muscle spasticity. Back in June, before I had the pump implanted I was taking 50 mg bacofolen oral three times a day. I had scolsis so my spine is fused from my neck to almost tail bone. They implanted the cathedar in my neck. Everything was good at 250 mmg until October when I got tight again over a couple days. The doctor upped the baccoflen all the way up to 850 mmg. But the whole time i was still tight. Then my legs started getting looser again, back in January, sitting in my wheelchair. And now they are so weak I can't even move them. I went from walking 150 feet in my walker in October to barely moving my feet now. But yet my arms and toes draw up on me when i lay down on my bed. (spasticity) And I'm back down to 350 mmg on the pump. And my legs are still extremely weak.

                            Could the cathedar be kinking in my neck?

                            Please any ideas will be greatly appreciated, and I'm getting so depressed.

                            Comment


                            • Originally posted by Leedogg View Post
                              Hello, my name is Lee, and I have cerebral palsy with muscle spasticity. Back in June, before I had the pump implanted I was taking 50 mg bacofolen oral three times a day. I had scolsis so my spine is fused from my neck to almost tail bone. They implanted the cathedar in my neck. Everything was good at 250 mmg until October when I got tight again over a couple days. The doctor upped the baccoflen all the way up to 850 mmg. But the whole time i was still tight. Then my legs started getting looser again, back in January, sitting in my wheelchair. And now they are so weak I can't even move them. I went from walking 150 feet in my walker in October to barely moving my feet now. But yet my arms and toes draw up on me when i lay down on my bed. (spasticity) And I'm back down to 350 mmg on the pump. And my legs are still extremely weak.

                              Could the cathedar be kinking in my neck?

                              Please any ideas will be greatly appreciated, and I'm getting so depressed.
                              Keep your head up Leedogg, we understand how you feel. I know it gets depressing trying to figure it out sometimes - I'm in the process myself, trying to figure out the problem with my pump/catheter. I go back next week for a dye study.

                              You need to tell your doctor you need some tests to see if there's a kink or a crack or a dislodgement, etc. - xrays, fluoroscopy, dye study, pump rotor test...These are standard diagnostic tests to find out problems with the pump. Good luck friend, and don't let the doctor tell you no.
                              Please donate a dollar a day at http://justadollarplease.org.
                              Copy and paste this message to the bottom of your signature.

                              Thanks!

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                              • rdf, I'm going to have a dye study next week. (I've already had two done one in October and one in January. It showed a little crystalizing in the middle of my spine, but fine below that.) This dye study will be done over a couple days x-raying me in 24 hour periods to check the dye. He can only do it when its refill time. So since its time, he's going to try this.
                                (never heard of a dye study over an extended period of time)

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