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Baclofen pump FAQ

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    i have one question i had refill and turn up about three week ago. i was able to walk around my apartment without no cane or anything now i am using my walker in my apartment to get around and have alot of pain and tingling and burning in my legs when i walk . i was wondering if any one has had this same problem and if so what would u sugest thank you very much for any help this is very frustrated

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      pump refills

      I had a pump put in in Dec. and the one thing that is consistent is the inconsistency of the results. Walk well some days and need lots of help others. Have been diagnosed for 20 years. Any improvement is cause for celebration. Started compounded 4AP a month ago and has helped much more than the pump. On a very low dose of baclofen with the pump, but still told I must get it drained and refilled every 6 mos. (at a cost of $3600). Anyone getting the same or different story??

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        Originally posted by aherrington View Post
        i have one question i had refill and turn up about three week ago. i was able to walk around my apartment without no cane or anything now i am using my walker in my apartment to get around and have alot of pain and tingling and burning in my legs when i walk . i was wondering if any one has had this same problem and if so what would u sugest thank you very much for any help this is very frustrated
        Many people with incomplete injuries depend on some degree of tone to provide them stability for gait. If you are having more problems walking, it is likely you need to be lowered on your dosage, at least for the times of day that you are most likely to be walking.

        Are you getting treatment for your neuropathic pain? Neurontin? Lyrica?

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment


          Originally posted by Pamela 54 View Post
          On a very low dose of baclofen with the pump, but still told I must get it drained and refilled every 6 mos. (at a cost of $3600). Anyone getting the same or different story??
          Yes, if you are still using the pump at all, the medication expiration is 6 months and it must be drained and refilled at that time. I would encourage you to shop around for a physician who can do your refill at the least amount of charge. Doesn't your insurance cover this? If you are not using the pump at all, it can be drained and turned off and then you don't have to have it refilled on a regular basis. You could discuss with your physician turning it off temporarily and going back to oral baclofen in a low dose to see if this would work instead.

          (KLD)
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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            Re Clyndamycin, or any other strong antiobiotic

            Overdoseaxium
            I am a newbie on the site. I suffer from severe tone/spasticity, most severe in late sleeping hours in the form of nasty extensor cramps. It slowly dissipates in the morning hours as my activity levels increase and medications take effect (baclofen, valium, tizanadine). I'm 3+ yrs out from DOI and tone/spasticity is one of my 3 biggest issues. I am ambulatory now (C7 incomplete Asia C) but it messes w/ my gait and being able to do certain exercises. I have considered the pump for some time, especially the idea of a trial to gauge benefit. The trial seems low risk Both my MDs have not encouraged the pump due to infection risk, and said live with the spasticity if you can. Not quite sure what to do

            On the subject of Clyndamycin or another strong antibiotic (Keflex, Bactrim, etc.) make sure take Acidophilus pills (up to 20B bacteria) per day for the duration of the prescription. Antibiotics kill of the good bacteria in your intestine allowing an overbloom of bad bacteria (c. difficile) which upsets your gut, the runs and possibly colitis. Acidophilus restores the good bacteria. Trust me on this one, it works. And I've made the mistake of not doing it also having had colitis.

            Comment


              what kind of colitis? how do they test/treat it?
              Last edited by Overdoseaxium; 14 Sep 2010, 5:37 AM.

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                Eating yogurt while on antibiotics is supposed to help.
                If your doctors don't recommend the pump, it requires refills and titration upward and they may not feel it will give you the benefit you desire.
                But certainly that is why they do a trial.
                CWO
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                  I know I'll get a pump once I get over being so scared to do so..can't imagine eternity w/o going this route actually.

                  Anyways, a thought. A person let me feel/see theirs. Clearly, it was visible under their skin, looked & felt like a gigantic hockey puck to me. If later in life, I wanted a colostomy, is there room for all this? Or would it have to be higher/an illiostomy?

                  Comment


                    Q79,

                    I have a pump as well as an illieostomy. (Needless to say I don;t wear a bikini .....) If it is a thought, find out where a colostomy would go, and then have the pump on the other side.

                    You can't really see mine, although I have to admit to a "few" extra pounds. I think it shows on thinner peeps.

                    The surgery wasn;t too bad for me, and at least I am awake now.

                    pm me if you want to chat about it.

                    S.
                    T7-8 since Feb 2005

                    Comment


                      Thanks. Bikini days have been long gone anyways! I have a urostomy on the other side already. Nothing in the near future for a colostomy & just more of a what if thought.



                      Originally posted by sjean423 View Post
                      Q79,

                      I have a pump as well as an illieostomy. (Needless to say I don;t wear a bikini .....) If it is a thought, find out where a colostomy would go, and then have the pump on the other side.

                      You can't really see mine, although I have to admit to a "few" extra pounds. I think it shows on thinner peeps.

                      The surgery wasn;t too bad for me, and at least I am awake now.

                      pm me if you want to chat about it.

                      S.

                      Comment


                        Forgot that, it might be an issue ..... that would be 3 things then.
                        T7-8 since Feb 2005

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                          Originally posted by sjean423 View Post
                          Forgot that, it might be an issue ..... that would be 3 things then.
                          Two bags....just belly art.

                          Comment


                            baclofen pump

                            I took my daughter in for her refill on her pump the other day and when they removed the old medicine, it should have been 9cc that was taken out but only 5 cc were actually removed. Then as we filled it back up there were 5 cc of medicine that would not go in. My Nurse said she had never had that happen before and called the Dr. The answer was .... let's see what happens on the next fill up ( 6 months from now ) has anyone else ever have this happen? Seems like I am a bit more concerned about this than the Dr.

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                              I got a new pump and a catheter revision both yesterday afternoon. This is the fourth time in just a couple of years for the catheter. This time, surgeon said I'd somehow yanked the catheter down so that it was barely in the spinal canal. The times before, the connector broke, the catheter became dislodged, and the other time, it cracked.

                              Right now, the pump is working perfectly, first time in a long time. Knock on wood. He said this time not to do pretty much anything for 6 weeks, just to be sure. He doesn't even want me bending over in my chair unless absolutely necessary. I must also wear a binder 24/7, except for the shower.

                              I feel like a limp noodle, and it's set on what it was for over a decade. I'll need to play with dialing it in, problem is the closest doc is 100 miles over old two lane Iowa roads, for the most part. But this doctor finally listens to EVERY thing I say about the pump. I've proven him wrong and myself right every time, so he said he'll listen to me and go with what I say in the future. I thought that was nice of him.

                              Good luck to all who have a pump or are considering one. I just got home from driving from the hospital 100 miles away. I'm whipped. As usual, the nurses couldn't get a needle into my veins. EIGHT times it took them. I don't mind much or get upset about much in this world, but I am kind of getting upset at the inability of nurses to stick a needle in my veins. They start crying, for Christ's sake, at least a couple of the young ones did. I didn't yell at them, they just felt bad.

                              I'm sick of surgery. Knock on wood.
                              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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                                I'd call Medtronics, and ask a rep, Grace's mom. I've heard of discrepancies before, but can't remember the amount of difference. I know what they pull out of mine is often not exactly what they'd figured it to be. Best of luck to your daughter.
                                Originally posted by grace's mom View Post
                                I took my daughter in for her refill on her pump the other day and when they removed the old medicine, it should have been 9cc that was taken out but only 5 cc were actually removed. Then as we filled it back up there were 5 cc of medicine that would not go in. My Nurse said she had never had that happen before and called the Dr. The answer was .... let's see what happens on the next fill up ( 6 months from now ) has anyone else ever have this happen? Seems like I am a bit more concerned about this than the Dr.
                                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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