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  • I'm also looking forward to getting relief from the extreme tone and moderate spasticity in my leg muscles (MS-induced), when they install a pump into me sometime in the next few weeks.

    Despite the doc's assurance that the Baclofen would 'head south', I was very worried that it would 'head north', but all of you seem pretty together so thanks for setting my mind at ease on that front.

    Less good is the news that it could take weeks or months (not years I hope), to get the dose right.

    And how serious is the initial operation - do they admit you to hospital for a day or two to begin with?

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    • Bebe - the do what they call a 23hr hospital stay, basically overnight afterwards. The you have to be careful for awhile on xfers and such, don't want to pull stitches or dislodge anything.

      Some people get their dose right quickly, and some don't. Me, it has been an ongoing process, but we think there is something wrong with my catheter and I am going for a replacement. You will see immediate relief, the Q is how long before you need a "touchup", all based on your specific needs. You will get real familiar with your pump Doc/Nurse.
      "a T10, who'd Rather be ridin'; than rollin'"

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      • bebe, after my implant of the pump in the mid 90s they set me at 300mcg while I was still under anesthesia. A week later they raised it to 360. I was at 360 for 12 or so years, and it was great. Now I'm back at 300, and it's working just as well as the 360 was working. Back then, they didn't imo stick to the rule of incrementally increasing the dose by 10% every two weeks, or whatever. Those were the good old days, or else I had a rogue doctor who didn't follow the rules and listened to his patients instead.

        From the movie Juno:
        Doctors are sadists who like to play God and watch lesser people suffer!

        j/k - kinda
        Please donate a dollar a day at http://justadollarplease.org.
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        • does te pump mask th problem?

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          • Originally posted by SABRES19 View Post
            does te pump mask th problem?
            I'd say it alleviates the problem. It works on the CSFluid, preventing spasticity and spasms from being so difficult that they interfere with your life.

            It might be considered to 'mask' the problem if you've relied on your spasms/spasticity to know when you have a problem somewhere. But if you keep an eye on your body for sores and such, it doesn't seem it'd be a problem. Good luck.
            Please donate a dollar a day at http://justadollarplease.org.
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            • I finally have the surgery scheduled. It was for the 20th of this month but I'm leaving for Cancun the 30th to watch my little sister get married. I didn't think it was a great idea to have the surgery and 10 days later go to Mexico.

              So I rescheduled for about a week after we get back. I'm having Baclofen and Morphine put in and was wondering how the dosage would be modified. Can different amounts and/or concentrations be added?
              No human society, present or past, has lacked music. Music is therefore one of the very few human universals, which puts it on the same level as food and sex.
              Fredric Lieberman

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              • Originally posted by Zoso View Post
                I finally have the surgery scheduled. It was for the 20th of this month but I'm leaving for Cancun the 30th to watch my little sister get married. I didn't think it was a great idea to have the surgery and 10 days later go to Mexico.

                So I rescheduled for about a week after we get back. I'm having Baclofen and Morphine put in and was wondering how the dosage would be modified. Can different amounts and/or concentrations be added?
                They can only change the concentration by refilling the pump. The amount pushed through the catheter can be increased by computer at any time.

                Be aware that having morphine along with baclofen means you'll have to get refills every month or so, or even every two weeks. With baclofen alone, you can probably go 6 months between refills. Going every few weeks or every month can become quite costly, depending on your insurance and/or your copays.
                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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                • Neuropathy is my primary reason for getting the pump, although I do have moderate-to-severe spasticity and spasms. I have severe dysesthesia and mechanical allodynia. I've tried every opioid out there and nothing helps.

                  Hopefully the pump will. I suppose if having both drugs in there becomes a problem I can go back to oral Baclofen.
                  No human society, present or past, has lacked music. Music is therefore one of the very few human universals, which puts it on the same level as food and sex.
                  Fredric Lieberman

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                  • I have had a Baclofen pump for eight years (I'm on the second one). It is installed about the T-12 level.

                    Does anyone using the "Pump" have any experience with a side effect on the bowels? I have had a problem that started shortly after the first pump esd installed.
                    RWC

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                    • My bowels slowed down. No problem per se, but they just work slower. My Doc hadn't heard this before, but then he always said I was weird. Have pump for ~5 yrs, getting 2nd one in June.
                      "a T10, who'd Rather be ridin'; than rollin'"

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                      • Well I've had the pump for a couple months now. I've been getting increases a couple times a week. I'm now at 800mcg/day and I've still seen absolutely no response whatsoever. [I responded very well to a 75mcg test dose.]

                        The doctor now wants to add a 50mcg bolus every four hours. Personally I think there is something wrong with the catheter placement. I've already had one refill and they verified that the baclofen is leaving the pump. The question is, where is it going?

                        Do you guys think there is any danger in setting the pump so high? The catheter is inserted between my two injuries at T7 and T10, is it possible the baclofen is just pooling between the two injuries? Could this be harmful?

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                        • Originally posted by Zero View Post
                          Well I've had the pump for a couple months now. I've been getting increases a couple times a week. I'm now at 800mcg/day and I've still seen absolutely no response whatsoever. [I responded very well to a 75mcg test dose.]

                          The doctor now wants to add a 50mcg bolus every four hours. Personally I think there is something wrong with the catheter placement. I've already had one refill and they verified that the baclofen is leaving the pump. The question is, where is it going?

                          Do you guys think there is any danger in setting the pump so high? The catheter is inserted between my two injuries at T7 and T10, is it possible the baclofen is just pooling between the two injuries? Could this be harmful?
                          I don't think that's possible. If there were some blockage in your spinal canal you would definitely know it. Continually pumping fluid into an enclosed space would build pressure. And if it was leaking that would mean your CSF would be leaking too and you would be showing signs and symptoms if it was a significant amount. I'm no doctor though.

                          I would think if there is a continued problem they would do a dye study. And if your doctor adds a bolus and it does hurt you then you can at least sue for malpractice lol. You're scaring me though because I exploded(burst fracture) T7-T10 and my surgery to get the pump implanted is the 14th.
                          No human society, present or past, has lacked music. Music is therefore one of the very few human universals, which puts it on the same level as food and sex.
                          Fredric Lieberman

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                          • Zero,

                            My pump is set to do bolus shots every 3 hrs, trying to get the baclofen going where it should. No problem doing one every 4 hrs.

                            I am at 890mcg, and I am not responding like I should, got plenty of spasms and tone going on. Dye study didn't show problem, but I am getting a full catheter/pump replacement in June. We too believe something is wrong somewhere.

                            Zoso,

                            Yeah there are issues to deal with, but man compared to where I was before pump, I ain't going back. Good luck on surgery.
                            "a T10, who'd Rather be ridin'; than rollin'"

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                            • I know the Baclofen will help and hoping the Morphine will. If Morphine or Dilaudid don't then I'll have to try something else, I'm just not sure what.
                              No human society, present or past, has lacked music. Music is therefore one of the very few human universals, which puts it on the same level as food and sex.
                              Fredric Lieberman

                              Comment


                              • The side effects of long-term Baclofen use

                                The effects of long-term Baclofen use are not clear to me and I have not yet been given the chance to meet the doctor who will eventually implant the pump and oversee my treatment, to ask them.

                                Anyone got any light to shed on this subject? E.g. what might long-term Baclofen use effects be and what do people do to minimise them?

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