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  • #31
    Zero,

    They managed to get my insurance to approve my being admitted the night before, as they needed to start the procedure at 7am. The pt evaluated my tone in the evening before the test and rated my tone in various positions, I was 4-5 on a scale of 0-5 everywhere. In the am I was taken up to a room, everything was explained again, the hitched me up to monitoring machines and they administered the dose. As I understand it, it was similar to getting an epidural. But since it was behind me, I didn;t see it. I had a nurse with me constantly from then on, as they were monitoring me for any complications. I actually went back to sleep for a little bit. A PT came in and did some rom every hour to determine the effect. After the trial injection, she monitored me, making notes every hour based on changes from her initial exam. I pretty much went down to a 0 everywhere. After a couple of hours, when they were sure there weren;t going to be any ill effects, I got dressed, and spent some more time with the pt. By mid afternoon I was done. They kept me another night, as they need to keep you under observation for 24 hours. But not sure every insurance co would go for that.

    We knew in about 3 hours that I had responded. My numbers were maxed out before the test, and very low after.

    The effects lasted about 12 hours, although not full force. It was a little like "Flowers for Algernon". LOL.
    Last edited by sjean423; 10-24-2008, 01:37 PM.
    T7-8 since Feb 2005

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    • #32
      Darrell posted when I did, lol.

      At my level I didn;t feel the injection. I had forgotten about the headache, that was the reason I went back to sleep, I needed to stay flat for a while, to help prevent it.

      My pump wasn;t put in for about a month after that.
      T7-8 since Feb 2005

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      • #33
        Apparelyzed
        I had a few questions. I have had
        transverse mylites for two years now. I came down with it when I was serving in the USAF, I got the disorder shortly after getting a heap B shot. I could never prove that the shot gave me this nightmare, It started one night I was hanging out with some other service people and my back started to tingle. When I got into my car my right arm went limp. I dropped off my friend at their house, and returned to base. After getting to my room I felt my right leg getting week. Then it went limp as well. I called 911 and when the cops got to my room they thought that I was drunk, and when the EMTs arrived on the scene they also that I was drunk. After finally arriving at the hospital I was put on a bed in the waiting area. I was scared out of my mind, so I kept asking for water, finally I had a cop come over at the request of one of the nurses she explained that I was no allowed anything to eat or drink until I was admitted because they didn’t know what was wrong with me. Then to add more insult to injury the asked to do a breathalyzer on me. I was so mad that everyone thought that I was just drunk I said okay to the request. Guess what the test sad 0.0. The cop apologized knowing that they were wrong. That is when they came and said that they were going to do a CAT scan. I only remember about half the test because I stopped breathing. When I woke up I was paralyzed from the neck down in ICU at the hospital. They had me intabated for about three weeks until I agreed to get a tracheostomy and I had that for about another four months. I was in the ICU for a total of 6 weeks 2 days. I started getting movement back in the ICU. My left side was able to wiggle a small amount. I wasthen I was flown to North Jersey to Kessler Rehab hospital where I was for five months. Over the five months I recovered my left arm which meant I could feed myself which was great, and my left leg. I was able to move my right leg it was just much weaker, and I was unable to stand or walk. As for the right arm I could move the hand and wrist but I couldn’t move the arm. As time went on so did my therapy I am now two just pasted my two years. I still go to therapy, and I am able to drive myself to therapy using a adapted car, I am able to walk with a leg brace with the use of a walker for short distances; however I would say that I am still in my chair 80% of the time because I can only walk for about 8 minutes before I have to sit. I still have tone which is the reason for my drop foot, and leg brace. I also have tone whenever I make a not so sharp movement like standing up, or reaching for something. I also feel like my tone is getting a little worse, but I feel that I am getting a little more movement back is that possible? I have recently been to see the foremost expert on my disorder Dr. Douglas Kerr. He said if my tone was lower I would have an easier time walking. I was told by my PMR doctor that he thinks the pump would be a good move, as well as my neurologist think it is a good job. I am trying to decide if I should get the pump or not. I would give anything to be able to walk again, but I have heard some pretty bad stories about this pump. I am trying to weigh the options. I am currently on 160 mg of baclofen orally. Since you have had experience with the pump I was hoping you could tell me the pros, and cons.

        Thanks Adam

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        • #34
          Well I'm sitting in the hospital right now, the same place I did inpatient rehab. So far my experience has been just like sjean423 described. I had to stop eating and drinking at midnight, and I checked in at 6am and got settled. The nurse put an IV in (saline loc just in case they need to get something in fast) and the PT came to do range. She didn't give me actual numbers but said I was "about has high as you can get" on both spasm and spasticity scales.

          The anesthesiologist came in around 7:30. He had me sit up on the edge of the bed and lean forward as far as possible. The nurse kept me from falling forward off the edge. He cleaned up my lower back with betadine and put a couple shots of something in to numb me up, even though I can't really feel much down there. Administering the test dose was painless, though it did make my legs jump quite a bit.

          At 8:30 the PT did range again, no noticeable change. At 9:30 there was a noticeable reduction of tone, and at 10:30 my tone, spasms, and clonus were significantly reduced. At 11:30, four hours past the injection and supposedly "peak" effectiveness for the dose, my legs were as floppy as could be! I transferred out of bed and back in again with ease. They've informally declared the test a success and they'll be scheduling a consult with a neurosurgeon for me. No idea how long I'll have to wait for the actual pump placement at this point.

          It's 1:30pm now and they're just waiting for some spasticity to return before they'll release me. They want to make sure I'm past the peak before they'll let me go, but I should be out of here by 4:00pm. All in all this has been pretty easy!

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          • #35
            Anyone that can help,
            I guess that my main question is is the pump worth it or not. I have a lot of tone that is making it harder for me to walk, but I have heard all the horror stories about the pump breaking. I got a disorder that 4 out if 1,000,000 get which means that Murphy has it out for me. I just trying to figure out if this pump is going to make so that I can walk better?, the Johns Hopkins and Kennedy Kreger Institute believe that this pump will decrease my tone to the point that I can walk without a walker or cane. What do other people think about this and the work that these guys are doing?
            Thanks Adam

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            • #36
              oxklein, I have no idea how it will effect you if you are hoping to walk with it, sorry. I suspect there is a fine line between too much tone and too little when it comes to walking.

              Zero. Fantastic! (insert high five smiley here).

              My surgery was about a month later.
              T7-8 since Feb 2005

              Comment


              • #37
                Originally posted by oxklein View Post
                Anyone that can help,
                I guess that my main question is is the pump worth it or not. I have a lot of tone that is making it harder for me to walk, but I have heard all the horror stories about the pump breaking. I got a disorder that 4 out if 1,000,000 get which means that Murphy has it out for me. I just trying to figure out if this pump is going to make so that I can walk better?, the Johns Hopkins and Kennedy Kreger Institute believe that this pump will decrease my tone to the point that I can walk without a walker or cane. What do other people think about this and the work that these guys are doing?
                Thanks Adam
                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.

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                • #38
                  oxklein, that's something you can determine with a test dose. Also, the pump is very adjustable and can give you more baclofen at different times of the day so if there's a particular time when you're spasms or tone are really nasty and get in the way, you can have it give you more at that time. It's entirely up to you and whoever you have take care of the pump should listen to your concerns. If you're spasms don't get in the way and aren't painful, you may just want to consider not getting it.
                  As far as the pump not working properly, I doubt that problem would it you.
                  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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                  • #39
                    Zero, I am glad to hear that the test went well.

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                    • #40
                      Originally posted by darrel View Post
                      In my honest opinion the pump has helped me out drastically.
                      Hey Darrel,

                      Great to hear that a year on, the pump is doing it's job!

                      Is it really a year?, time goes by so fast!

                      Simon

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                      • #41
                        Thanks Simon,
                        Yes it has been a year, and I thank most of my decision to you, Ryan and Stephanie.

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                        • #42
                          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
                          Courage is being scared to death but saddling up anyway. .(John Wayne)

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                          • #43
                            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 got my pump through my Medicare insurance and it doesn't cost me a dime to get a refill with just baclofen, but I don't know about any other drugs. I never get charged when I was trying other stuff out but I'm not sure if things have tightened up with Medicare or not. Whatever kind of doctor you visit will have all the warnings for you depending on what drug you get. When the very first got the pump, it didn't work and I slowly had to increase the dosage until I found one that worked. I'd say the biggest side effect you have to worry about is being a little sleepy at first, but I never had that problem until I started putting other drugs in it besides baclofen. You'll be able a tell all a lot more once you have the trial done. With the new pump at my dosage which is approximately 1500 mcg a day, I can go roughly a month, but my spasms are very severe and I require much more than most people do. My guess would be you would start probably no more than 200 mcg a day depending on how bad your spasms were, you could probably go two or three months between refills.
                            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.

                            Comment


                            • #44
                              ........
                              Last edited by addiesue; 11-07-2008, 08:31 PM. Reason: double post
                              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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                              • #45
                                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.
                                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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