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Thread: Baclofen pump FAQ

  1. #101
    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.

  2. #102
    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.

  3. #103
    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.

  4. #104
    Senior Member rdf's Avatar
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    Quote 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.
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  5. #105
    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)

  6. #106
    Senior Member McDuff's Avatar
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    Damn Rdf, I thought you had yours "locked", sorry to hear ya still have probs too.

    Leedogg - never heard of a long dye test either, hope it pinpoints a prob, if there is one.

    I just had my pump adjusted to do big shots every 3 hrs. We didn't change dose(I'm at 860/day), just how it is delivered. We tried a 2 hr shot but it made no diff. I seem to see a diff, my legs haven't been "quite" as bad today, but this is only going on rolling in bed, been a bed squid today due to butt sore. If this 3hr strategy works, it might seem to point to maybe a micro-hole in the catheter, even though the dye test didn't show it(fast dye test). Theory being, med can leak out traveling in slow motion, but when "pushed" in faster, the med makes it past.

    I have an appt. with a pump surgeon in 2 weeks, to see about getting the cath replaced.
    "a T10, who'd Rather be ridin'; than rollin'"

  7. #107
    Senior Member rdf's Avatar
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    Quote Originally Posted by McDuff View Post
    Damn Rdf, I thought you had yours "locked", sorry to hear ya still have probs too.

    Leedogg - never heard of a long dye test either, hope it pinpoints a prob, if there is one.

    I just had my pump adjusted to do big shots every 3 hrs. We didn't change dose(I'm at 860/day), just how it is delivered. We tried a 2 hr shot but it made no diff. I seem to see a diff, my legs haven't been "quite" as bad today, but this is only going on rolling in bed, been a bed squid today due to butt sore. If this 3hr strategy works, it might seem to point to maybe a micro-hole in the catheter, even though the dye test didn't show it(fast dye test). Theory being, med can leak out traveling in slow motion, but when "pushed" in faster, the med makes it past.

    I have an appt. with a pump surgeon in 2 weeks, to see about getting the cath replaced.
    No, I've been screwed up since Jan 31. I was fine for two months, then got a refill, and started getting spasms, and fell out of bed. I know what the problem is, it's the catheter again, dislodged or the connector is screwed up - bouncing out of bed only made it worse, because it was 12 hours later that I was in full withdrawal.

    I checked the recall, the catheter type they used is under the FDA Class 1 "informational recall." It's model 8709SC, and it's supposed to be used as one single cath, from pump to intrathecal space. But I have two links, the first link is from the original pump, 1997. So they used this 8709 and patched it into the old model 8703. I had a long talk with Medtronics and read up on the recall, and the 8709 can cause problems because it gets misaligned when connected. And it wasn't made to be part of a two-link catheter system like I have.

    I told the doc to replace the whole catheter(s) when he did surgery last Dec. He said only the last piece needed replacing. I asked about recalls, he said he heard of none. The recall came out just a couple of months before my surgery, and gives specific steps and checks to avoid the problems that initiated the recall.

    I am assuming that their is a problem with the connector between the old model catheter and the new one. The problems that brought forth the recall was connector damage, or the catheter port would get sucked into the connector seal, etc. But they're talking about the connector to the port on the pump in the recall. Medtronics said using the 8709 with the old model is feasible, and they have little kits to make connectors between the two different models. That didn't sound too good to me. I finally convinced my doctor. He's a hardass, we don't get along. I went over his head to Qaulity control to get him to listen to me. He doesn't like me, and I don't care for him, so it's not a good situation all around.

    It all started when he was talking about the pump when I first met him, and he was misinformed about many things, but I kept my mouth shut. Then when I was in the ER with full on withdrawals and he wouldn't give me a bolus, only an increase of 15%, we got into an argument. The ER docs had already given me 30mg of valium via IV, three doses of 10mg, with absolutely no effect on the spasticity, before the pump doc showed up.

    I ended up telling him I knew more about pumps than he did. He stormed out. 24 hours later I was still having full body spasms every half second, and the ER docs thought I was doing damage to my muscle tissue, and were worried. He came in and finally gave me a bolus and increased dosage. The bolus kicked in 7 hours later so I could drive the 100 miles home. As soon as it wore off, I'm back to constant tone and spasticity. None of the other neurologists and ER docs like him, I could tell. He's very short, and I believe he has a Napoleonic complex - he's very arrogant, won't listen to my input until I'm almost yelling at him about what I know about my body and how it relates to the pump. He's the only guy around, though, and that's 100 miles. The next closest is twice as far at the UofI, which I might end up going to if things don't get fixed this week.

    But I'll get er done. Hope you can figure your problem out McD. And you too LeeDogg. If he can't find anything wrong using the dye study, which sometimes happens, I'm going to tell him to replace all the catheter, period. If he won't, then I'm having him refer me to Iowa City, where the University is. I'm wearing down and there's no reason for it except for a stubborn doctor. I can't even sit in my chair without fear of falling out, and it's been like this since last July (except for the two months after catheter surgery)

    Good luck all, we'll get it figured out. Keep us updated guys.
    A defective Medtronic catheter used in the company’s implantable intrathecal pain pumps has been linked to the death of one patient. In June, the company alerted doctors to the problem, but now, the Food & Drug Administration (FDA) has classified Medtronic’s catheter safety alert a Class I recall. Such a recall is defined as a situation in which there is a reasonable probability that the use of the product will cause injury or death.

    Medtronic’s intrathecal drug delivery systems consist of an implantable pump and catheter that deliver small quantities of drug directly into the intrathecal space in the spine. These devices are used to treat chronic, intractable pain and for the management of severe spasticity of cerebral or spinal origin. The Medtronic catheter recall involves the following models: INDURA 1P Intrathecal Catheter, model 8709SC [ the new catheter model they put in in Dec. ], Intrathecal Catheter, model 8731SC, Sutureless Pump Connector Revision Kit, model 8578, and Intrathecal Catheter Pump Segment Revision Kit, model 8596SC.

    Medtronic says it has received 83 reports of infusion system difficulties worldwide that have been attributed to either an occlusion or a disconnection of the sutureless catheter from the pump. In one case, a patient died from acute baclofen withdrawal related to complications from an improperly connected catheter.

    According to Medtronic, an analysis of the products returned indicated that when there is an occlusion (misalignment during connection), the catheter port may become embedded in the inner wall of the connector seal, rather than aligning with the connector. Improper attachment can result in catheter connector damage, leaks at the connection site, or catheter disconnection some time after implant.

    Occlusion or disconnection of the catheter can cause a lack of therapeutic effect, a clinically significant or fatal drug overdose or a return of underlying symptoms, and drug withdrawal symptoms. According to Medtronic’ s press release, patients receiving intrathecal baclofen therapy are at higher risk for adverse events because withdrawal from this drug can lead to a life threatening condition if not treated promptly and effectively.

    Neither Medtronic’s letter to physicians in June nor the FDA’s classification Friday called on patients to have devices removed, and hospitals and doctors are not being asked to return unused products. However, patients who experience the catheter problems described in the recall will require a surgical procedure for correction, Medtronic said.
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  8. #108
    Senior Member rdf's Avatar
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    Forgot to add, the surgeon was new at the hospital. In fact, I was one of his surgeries his first day in the new OR. He came from Missouri - and I'm sure it's hectic working with a new group of nurses and such, and maybe the recall instructions slipped by him. IF doctors and surgeons even read such things.

    How much mcg is your bolus every 2 hours McD?
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  9. #109
    Senior Member McDuff's Avatar
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    Dayaam, guess Last I "talked" with ya was in your 2month "grace period". You definitely have a storied past with pumps. It sucks when you got a Doc who doesn't listen, sounds like you got real winner there.

    My pump readout says I have catheter 8731, no SC at the end. I asked my NP about this when the recall hit, and she said that they are two different caths, so I let it drop, but will ask the surgeon again just for shits&grins.

    As for bolus shots, now every 3 hours, from printout;

    Basal Rate = 4.0mcg/hr

    Start Time Duration Rate
    00:00 00:10 h:m
    1) 100.0mcg 600.0 mcg/hr

    03:00 00:10
    1) 100.0mcg 600.0 mcg/hr

    ...

    21:00 00:10
    1) 100.0mcg 600.0 mcg/hr

    Daily Dose = 890.7mcg/day

    So I went up a little this time to 890. Almost all coming in the 100mcg bolus'.
    "a T10, who'd Rather be ridin'; than rollin'"

  10. #110
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    I guess I need to be a little more proactive here. I just looked as well, and my catheter is 8709. No SC tho. Does the SC make a difference, or does the printout just list the numerals (the SC being understood)?

    I'm not having any issues, but didn;t even realize there could be.

    Guessing I have some q's for my doc!

    Sorry you are back to having issues, and have a jerk for a doctor! Hope you get this resolved asap.
    T7-8 since Feb 2005

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