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  • #46
    Originally posted by addiesue View Post
    I also have medicare and my refills are covered. I am on 225mgc a day and I get a refill every 6 months. I also have a pedi sized pump.
    I get 15 mg per hour, 360 per day, and I have a reservoir that lasts six months. That's as long as you can go, legally, between refills. My pump is acting up big time, I believe there is a kink or crack in the catheter, and it's floppin me all over the place 24/7. Trying to get in for some diagnostics, because right now it's like before I ever had a pump. And those were the bad old days, bad being not good.
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    • #47
      Yes when I go in for refill they have to take out medicine that is left over. Technically I wouldn't run out for a few more months but they say the meds would be old.
      How long has that been going on? Did you see the thread here about the recall on some catheters? I hope you get it looked at quick. Getting overdose or withdrawal is not good. I have been through withdrawal when my cath messed up. It was horrible.
      If you can't handle me at my worst, then you sure as hell don't deserve me at my best.


      Sometimes it is easier to widen doors than it is to open minds.

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      • #48
        That doesn;t sound good rdf!

        Mine was just refilled last week, if is around 170 a day, and like addiesue says lasts 6 months. They take out what is left over, and compare it to the calculated amount that should be left. It helps to check that it was working properly.

        I am getting it refilled a 5 months next time though. The last 2 days before my refill were the absolute worst I had had in the 6 months. I actually expected that they wouldn;t find anything left in the pump, but they did. My tone is erratic, so some days are better that others. I have tried to tweak it so that most of the time I am good, but that means I will have some bad days. and some over-medicated super floppy days. But these days were approaching pre-pump levels. MY doctor said that if was possible that as the meds got older, they didn;t work as well for me. Hence the 5 month refill.

        My insurance covers it, so I am not sure what it would cost. I don;t think it was treated as a prescription med would be, as I have a separate plan for prescriptions, and it went to my medical.
        T7-8 since Feb 2005

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        • #49
          It goes to medical not scripts with medicare also. I had mine refilled Monday. Ever since then I have had worse tone and nerve pain. I keep hoping it's the weather change.
          If you can't handle me at my worst, then you sure as hell don't deserve me at my best.


          Sometimes it is easier to widen doors than it is to open minds.

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          • #50
            The weather really kicks my tone up several notches.
            T7-8 since Feb 2005

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            • #51
              For all of you having problems when you get refilled, make sure they're using the same concentration level of baclofen. It could be that you're getting a stronger concentration one refill compared to another. That would be on the pharmacy where the liquid baclofen is coming from.
              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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              • #52
                Originally posted by Cowboys_Place View Post
                I am at the end of my rope, I have been a c4/5 for 24 years and have always taken baclofin orally but the last few years the spasticity in my feet and legs at night has gotten so bad I am lucky if I get 2 hours worth of sleep. It's gotten to the point where I take 7 10 mg tablets of it just at night which is probably a lot?
                Still the spasticity wins out so I am now thinking about A baclofin pump so can someone tell me how much it costs to refill this contraption and how often does it have to be refilled?
                I only have Medicare so I'm guessing like my oral medicine refills are going to come out of my pocket.
                Are there any hazards to it I should inquire about?
                thanks
                I received my pump a year ago and have a home care nurse that comes around every month to increase I am now up to 545.5 mg/day and have had it refilled twice. they send it UPS and the first time they sent a receipt that said they charged almost $2500.00.. I am also on Medicare and have never been charged any type of co-pay. The battery life in the pump is like a five year thing. I told the Dr. that put mine in that I was very active and asked if he could give a little extra length on the catheter for fear of some of the horror stories I have read. I was real indecisive on the pump due to some of the stories I had read but then I also had to look at the fact that they would not recommend having it put in if it wasn't safe.

                Addi, I was told that the baclofen is affected by not only the cold but the humidity as well. Isn't it nice to be able to tell the weather better than the weatherman.

                RDF, sorry to here you are having trouble with the catheter. How old is it buy the way?.

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                • #53
                  Darrel, I've had a pump since '96 or so. I'm on my fourth pump. I had problems with the first two, bad battery and cracked catheter. But I've been problem free for almost a decade now. My current pump is just two years old, but the catheter linkage is 9 years old, which makes me think that's the problem.

                  I'm newly living in Iowa, and can't get to see the pump folks at UofIowa until late this month, so I have Medtronics looking elsewhere for doctors versed in diagnosing pump problems. Thanks. Intrathecal baclofen allowed me to work without constant problems, and to live a better quality life, basically. Before the pump I couldn't do much due to 24/7 constant spasticity. I'll get by, but I tell you, it's a lot harder in your forties than in your twenties to handle constant severe spasticity. Getting hammered to end the spasms is no longer an option, heh.

                  I've been on the same dosage since the first pump, 12 or so years now - 360 mg/day. I haven't heard of anybody needing to up their dosage after such a long time. I asked a couple of physiatrists I know from MT and CA, and they said they'd not heard of such a thing. Medtronics claims if I've been on the same dosage so long, it doesn't make sense that I'd need an increase. So I'm thinking I've cracked, kinked or dislodged the catheter.

                  But I wonder about tolerance after all this time...maybe I do just need a higher dose, the experts be damned
                  Please donate a dollar a day at http://justadollarplease.org.
                  Copy and paste this message to the bottom of your signature.

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                  • #54
                    Originally posted by rdf View Post
                    Trying to get in for some diagnostics, because right now it's like before I ever had a pump. And those were the bad old days, bad being not good.
                    That kind of makes me think the catheter as well. If you were building up a tolerance, I would think it would creep up for a while. Did it jump right to "old days" level?

                    Although cranking up the dosage a bit, and seeing if it makes any difference might be a good first test to see what is wrong. If it helps, it isn;t the catheter, if it doesn;t, then continue with the diagnostics.

                    Personally, I want one with a button. Like the pain management in the hospital. B/c my tone is so erratic, to get mostly good days, I still have some bad ones, and then some "too floppy" ones. (Not that the bad ones are anything like before).

                    Good luck, hope they get it straightened out soon.
                    T7-8 since Feb 2005

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                    • #55
                      Thank you all for the information you have been very informative! I would like to know if anyone could tell me what the approximate recovery time is from surgery after having this pump installed?. It is one laid up for a few days or not that serious?
                      It seems some of you are on some serious dosage or am I reading those numbers wrong?
                      I'd take four 10 mg tablets in the morning 3 tablets in the afternoon and 7 at night does that seem like a lot?
                      Courage is being scared to death but saddling up anyway. .(John Wayne)

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                      • #56
                        Cowboy, I think it's different for everybody. I was in and out of the hospital the same day, and went to work either the next day or the day after. I left the hospital AMA, but I was fine. I handle anathesea well, which is the main concern for keeping folks overnight.

                        You really can't compare the effects of oral baclofen with the intrathecal delivery of baclofen. I took oral baclofen in insane amounts, but it never did anything for my spasticity. The liquid baclofen worked from the getgo, and the amount is very minuscule. I've been on the same dosage level since the beginning, although I've having catheter problems right now. But everybody is different, so that's why the dosage varies.
                        I wish you the best of luck friend, the pump can really make a person's life so much easier.
                        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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                        • #57
                          Oral baclofen is in dosages of milligrams, (mg). The pump is in dosages of 1/100th of that, micrograms. "The correct symbol for microgram is µg, but since that is very tough to type on a keyboard, you will often see it listed as ug or mcg, but both mean microgram."*

                          For me the 170 mcg is spread out over the day in varying doses. I get around 4 mgc/hr from midnight to 5am, and 6 mcg/hr the rest of the day. I also get an extra dose (a bolus) at certain times. It is very programmable. If you tone is at its worst at 3:32 pm, the pump can handle that.

                          The surgery was actually considered outpatient, but instead on home my doctor had me go to the rehab hospital for that night and the next. The first night was post-op reasons, then they kept me another day while they were titrating the dose, bringing me off the oral baclofen and some PT, dealing with the lowered tone. I didn;t have any problems with the surgery at all. By the time I went home (48 hours or so) I was feeling fine. The pump surgery was below my level of sensation, but I had some additional referred back pain I tend to when something else is going on, but that was handled w/ oral pain meds for a day or two. The incision healed quickly.

                          It is very telling, when I read about rdf's issues, and the difficulties Tinamaria had with hers, and that they are both still very pleased with the pump, how great it is.

                          Cowboy ..... there are a lot more threads here on the pump, if you haven;t found them yet use the search function.

                          * from online conversion.com ...... I was looking for a way to type the µ
                          Last edited by sjean423; 11-10-2008, 09:54 PM.
                          T7-8 since Feb 2005

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                          • #58
                            Been hesitating

                            Originally posted by darrel View Post
                            I am a c5/6 incomplete walking Quad and have had the pump in for a year.
                            I have not found that I have any loss of ability if any thing I have gotten better as far as stamina and duration.
                            I am now able to walk about a city block length and stand for about 45 min at a time. When I first started out I was walking maybe 150 ft and standing for 10 min. I have even been out hunting with the guys again this year that was one thing I thought I would not be able to do again.
                            I have found that the less spasticity in my legs has helped me to exercise easier. I still have a problem with my drop foot.
                            I am at 545.5 micro grams per day and they are talking about backing me off some now at 10% increments.
                            I still have a few spasms but they are at night and not nearly as bad.
                            In my honest opinion the pump has helped me out drastically.
                            Been incomplete for 35 yrs, crutch ambulation for 30 yrs, using oral diazepam since injury (tryed everything else, nothing better) Docs used to push this pump thing a lot. I resisted due to stories about ever increasing doses, breaking caths, etc. Now, I'm beginning to consider this since my spasms have gotten so bad, I have problems exercising therefore increased weakness, and no walking. The info here has been very helpful.

                            TWO QUESTIONS:
                            Has anyone else noticed a decline in docs recommending the pump?

                            How does it affect bladder and bowel function? Thats where I think my spasms HELP me most. Come to think of it, erections and/or ejaculations?

                            Thx for any feedback.

                            Dan
                            Last edited by danw; 11-14-2008, 03:56 PM.

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                            • #59
                              I talked to a pump surgeon earlier this week. He said the way he will insert the catheter very low on the spine, in the cauda equina region, then push it up alongside the spinal cord until the end is just above the level of injury. Is this how all catheters are implanted? I was under the impression they were just affixed to the spine above the injury level.

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                              • #60
                                Rethinking the pump

                                I posted this earlier in this thread, but seems it was lost in the shuffle. I'll try again. Any knowledge or experience appreciated. Here's my previous post:

                                Been incomplete for 35 yrs, crutch ambulation for 30 yrs, using oral diazepam since injury (tryed everything else, nothing better) Docs used to push this pump thing a lot. I resisted due to stories about ever increasing doses, breaking caths, etc. Now, I'm beginning to consider this since my spasms have gotten so bad, I have problems exercising therefore increased weakness, and no walking>>increased weakness, and so on. The info here has been very helpful.

                                TWO QUESTIONS:
                                Has anyone else noticed a decline in docs recommending the pump? If so, do you know why?

                                How does it affect bladder and bowel function? That's where I think my spasms HELP me most. Come to think of it, erections and/or ejaculations?

                                Thx for any feedback.

                                Dan

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