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Baclofen Pump Refill

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    Baclofen Pump Refill

    Hi All...
    This has been an interesting week for me. I went in to get my pump refilled on Tuesday.
    My pump refills are a little tricky because of where the neuro surgeon placed it, but Dr Abel always gets it done....Until Tuesday.
    At this point, I have to say my body has changed in the last 15 months. I have lost over 40 pounds.

    We tried 3 different positions...on my back, on my left side and in a chair. Each time she felt confident that she was in the right spot. She couldn't find the port. I left and was told I would hear something on Wednesday. Luckily, Dr Abel always refills my pump at least 2 weeks prior to my alarm date. This time, we had 22 days lee way. Before I left, I went downstairs and did x-rays of where the pump was sitting. The x-ray folks thought I was kidding when I told them that she was coming down. She came down and directed them for what she was looking for. However, she wasn't seeing what she wanted.

    When I got home I emailed my Medtronic rep. Dr Abel had already called her before me. Dr Abel called me at work Wednesday afternoon with the new plan.
    I went to USF medical/ Tampa General at 9:30am on Thursday and did more x-rays. I then went upstairs to see Dr Abel. My Medtronic rep was also there. She told me that I had broken Dr Abel's 20 year streak of always refilling a pump. I know I am her hardest pump refill patient.

    She had told me that if she couldn't find the pump, we would look at the pump doing a fleuroscope.
    I waited for her while she was with other patients.

    When I did see her, she said we would do the fleuroscope next Wednesday at 8 am. As I was getting ready to leave, she asked to look at my pump again.
    She started moving it around and then flipped my pump over. We both said at the same time..."now we know what is going on" She feels like my weight loss is a reason for this but, with the fleuroscope, she can make sure the port is accessible.

    I will post with my results on Wednesday.

    Take Care, Bob


    This is a little worrying to read (especially for someone who will get his first refill in a few weeks!) You've been such a great resource and pillar of support on this forum for us "pumpsters." I'll say a prayer for you for future success -- and it sounds like you're in good hands. Congrats on the weight loss, though! Brad


      Wow Bob, that's interesting alright!

      Good thing you have extra time for the refill, a good example of why we should always pad for extra time.

      Are you saying your physiatrist manually flipped the pump? And the port was flipped due to your weight loss? If so, you'd think you would have felt it some maybe? And it didn't affect the catheter? Which is good!

      Good luck next week (although your doctor sounds like she has it under control), and keep us posted.


        Thanks Brad and Blue

        I am sure your pump refill will go fine Brad. I am in good hands.

        Blue- I have felt nothing out of the ordinary. When Dr Abel was moving the pump on Thursday, she showed me she could turn it to either side and then she flipped it. As far as I know, it has done nothing to the catheter. My pump is working well.

        I will check in on Wednesday.

        Take Care, Bob


          Hey Bob,

          Wow, you've had an adventurous time.

          I've heard it is possible to flip the pump, especially with weight loss.
          That time my pump went on "walkabout" they wondered if it had flipped
          but it hadn't, it had just broken out of the pocket and drifted to another
          area of my abdomen.

          Once they get it refilled this time, did they say anything about, in the future,
          going in and repositioning, or reanchoring your pump (possibly creating a
          new pocket?) Or will each refill be done under fluoroscope? Seems if it
          flipped once it could flip again, but I have no knowledge of the possibilities
          once a pump flips. Maybe it behaves and stays unflipped once it's flipped

          There's the binder technique that a woman I've read about uses. She always uses a lightweight binder to keep it in place. She's had hers flip more than once, so for her security, and permanence of the pump position, she keeps the binder on. I'm not trying to be morbid about the whole thing,
          just interested to find out what their strategy will be or how a flipped pump behaves in the future.

          I agree that the catheter is probably no issue, they'll probably check that while
          you're under the fluoroscope too...maybe even run a dye test. I knew within hours
          that my cath was out, so you'd know.

          Hope the procedure goes well next week. It's amazing what kind of knowledge
          one can gain reading the threads. Your experience will help others
          who might have to deal with it. It has encouraged me to give myself a little
          more leeway when getting pump refills, I'm always cutting it pretty close to the due

          Sorry for your having to go through the hassle. Let us know how it goes.

          P.S. And once more I repeat my motto for new dumpsters like Brad...No matter how many issues you have with the pump, or revisions they have to make, it is so worth it if it's helping relieve your spasticity.


            Originally posted by rdmc View Post
            Hey Bob,

            P.S. And once more I repeat my motto for new dumpsters like Brad...No matter how many issues you have with the pump, or revisions they have to make, it is so worth it if it's helping relieve your spasticity.
            Darn auto-correct. We're pumpsters, not dumpsters, even though we may feel like trash sometimes


              Hi All

              So, Wednesday I was at TGH/USF at 7:45am... It was standing room only in the x-ray room...LOL.
              Dr Abel was there along with my Medtronic rep and an associate of hers, along with 2 x-ray techs.

              We refill my pump while I am on my left side and then leaning my neck and shoulders back to the right. They used the fleuroscope to make sure of pump position and if the port was facing up. It was.

              The pump refill was uneventful. Dr Abel usually gets the port in the first try. We were only able to fill my pump halfway. My pump is a 40 cc pump. They only had 1 refill kit available. So I am good for 2 months.

              We didn't do a dye test. The catheter is fine. But the pump flipping is not good for the catheter and we don't want to risk things.

              Dr Abel and my Medtronic rep discussed the next step with me. We will have to go in and re position my pump. I will be seeing Dr Smith on Sept 25 to when we can do the surgery. We will not be replacing the pump. It still has 43 months on the battery life. Right now re positioning my pump is a elective surgery due to weather conditons.

              I have had this re positioning surgery before. It happened about 8 years ago and was done without any problems.

              Take Care, Bob


                Hi Bob,

                Good to hear, as you expected that the catheter is fine and your refill was done.

                It always amazes me that the doctors can get the port location on the first try :-), a good thing!

                Sorry to hear you have to go through the repositioning surgery, did you get confirmation it was from the weight loss or tough to say the exact reason?

                I know it's not normal practice from others experiences I've read, but it would be good to be able to get a new pump and increase the time when another surgery is required. I guess if the battery life is still good it is not approved to use a new pump?

                Not sure why you can only have your pump refilled halfway, but I guess it is a nonissue anyways as they can fill it up during the surgery more.

                I think you are in Florida, stay safe!

                And thanks for sharing your experience and knowledge, it is always very helpful.


                  Hi Blue

                  Thanks for the nice comments...Yes, the pump issue is due to my weight loss. As I told Dr Abel, weight loss is not all that it is cracked up to be...LOL

                  Dr Abel is great with finding the refill port. A plus of the surgery is that Dr Smith will move the pump closer to the surface. My current location is very deep.

                  It is too early to replace my pump. I am ok with that. As for the pump refill, I got the last refill kit. They did have more coming in the next day. Dr Abel lost 2 refill kits when we tried to refill my pump the 1st time.

                  Take Care, Bob


                    Hey Bob,

                    Glad they were able to refill it. I'm across the Bay from you. Nice weather we've been having

                    They did the repositioning surgery for me once when my pump broke out of the pocket.
                    I hadn't thought about it, but the pump flipping does put strain and the catheter, and you've
                    been blessed to have the same catheter for so long.

                    What about weight loss makes the flipping more probable? I've read that losing weight can
                    cause a pump to flip, but never read the explanation why. Just more space to move around?

                    Do you have power? We're still without it, but I'm "living" because we have a small window
                    AC powered by our generator. What's the plan, once you go to the surgeon, then you'll get
                    on his schedule?


                      Hi RDMC

                      I am doing fine. I live in Town N Country. I stayed at a friends out in Pasco county. I came back Tuesday morning. I have been working at the hotel since Wednesday.
                      I hope you get your power back soon.

                      As for the pump, yes the reason it flipped was because of my weight loss. This losing weight isn't all it is cracked up to be...LOL.
                      It hasn't been fully explained to me. I will ask Dr Smith on the 25th. Then I will get placed on his schedule.

                      Take Care, Bob


                        Hi all
                        Well, I saw my neurosurgeon this morning. The plan was for this visit to set up re-positioning my pump. That's not what Dr Smith had in mind. He wants to see if the pump is ok* and hasn't flipped, when we do my next pump refill. That will be in mid October.

                        In the meantime, I am going horseback riding on Wednesday morning...Yee Haw!!

                        Take Care, Bob


                          Hey Bob,

                          I just wrote a post to this thread and then it disappeared, so here's my second attempt.

                          If the horseback riding doesn't flip the pump, I think you're safe, LOL.

                          I've mentioned it in other places but I've always worn a thin binder for security
                          ever since my pump went on walkabout. Now I wear a scoliosis brace, but it does
                          the same thing in securing the pump in place because it cinches right about the pump.

                          I'd say go for it and do what you usually do and see what happens. You don't want
                          your life ruled by whether it will or won't flip.

                          Here's a question for you since you keep up with Medtronics issues. Today I
                          saw my physiatrist for the first time since my surgery and she said this time I had gotten the pump with the bigger reservoir. My run out of "juice" date would be 9 months if they didn't adhere to the 6 months change protocol (I'm at 280 mcg). Do you know anything about these bigger reservoir
                          pumps and why they developed them?



                            I hope this is good news for you.


                              I had my first re-fill this morning. My pump was installed April 10th. The device was in the correct place and position. The process was like getting a shot in my belly. It was very easy and painless.