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    #31
    Originally posted by Kimba22 View Post
    Hi rdmc,



    If you look at a picture of the pump, there's a part that sticks out where the surgeon threads the sutures through. For whatever reason, the neurosurgeon has mine down toward my pelvis.
    Hey Kimba and BG,

    I actually had been hearing/feeling a "thunk" when I walked over the past few months. I mentioned it to my physiatrist and she said the pump was probably rubbing up against something. So it may have taken months to actually get to the state it was after it "dropped."

    Recovery seems to be on track...I go back and see him to get bandage removed at 2 weeks. Until then, I can't see the incision. I've been a little curious about it, but that "baby" is covered up and stapled down...so no chance for a peak. I'll have to be patient.

    And Kimba, yes, the Frozen soundtrack was my way of referring to the cold (my subtle attempt at humor.)

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      #32
      Hi RDMC

      I am glad to hear things went well with your surgery. I am glad the catheter was fine. Anytime, they don't have to go near the catheter is a good thing.

      I go for my next pump refill on April 8. I might find out then when we may change my pump. My dr likes changing them after 6 years & this is year 6.

      Take Care, Bob

      Comment


        #33
        Originally posted by BobOP View Post
        Hi RDMC

        I am glad to hear things went well with your surgery. I am glad the catheter was fine. Anytime, they don't have to go near the catheter is a good thing.

        I go for my next pump refill on April 8. I might find out then when we may change my pump. My dr likes changing them after 6 years & this is year 6.

        Take Care, Bob
        Hi Bob,

        I know you've had numerous pump replacements, but I was wondering do they change the position of your pump?
        Didn't know if they could use the same pocket more than once or twice.

        Let us know when your pump surgery is going to happen, after you discuss it with your doctor.

        Comment


          #34
          Hi Rdmc

          As far as I know, they have moved the pump slightly, each time when we replaced or moved it.

          The last time it was moved was 2009. This was after a previous pain management dr placed the pump too close to the skin.

          It was moved by a neuro surgeon & is now manged by different dr. Things are going well

          Take Care, Bob

          Comment


            #35
            Originally posted by rdmc View Post
            Didn't know if they could use the same pocket more than once or twice.
            Hi rdmc,

            Yes, it's my understanding they can (just like a pacemaker or mediport can go in the same pocket), unless there's a problem with the location or an infection. The new pump would need to be placed in the same pocket immediately, otherwise scar tissue begins to fill the pocket as it heals. Once that happens, the site can not be used again. My doctor wants to move mine as well, because it's lower than it should be.

            I was asked about my pump the other day from my nurse, not exactly sure where she was going with it, since most are just curious and don't have a clue. I was surprised when she knew quite a bit about them, since she used to fill them. She knew mine was probably hard to fill until the person filling it became familiar with it, because it wasn't placed clockwise properly.

            She also told me that besides the reservoir that holds the medicine (that access port is larger and centered), there is actually another one that holds cerebral spinal fluid (that access port is smaller, and off to the side). She said that technically, only a doctor can withdraw the cerebral spinal fluid, since there's more risk (e.g. contamination of the spinal fluid, which could cause meningitis).

            I'm assuming that means no more spinal taps are needed if you have a pump. I don't believe my MS Specialist knows about this (at least he didn't 4 years ago). That's when he offered to put me on Tysabri (the JCV antibody test still wasn't available), even though I couldn't get MRIs then. But, I would have needed spinal taps done a minimum of every 6 months to check for PML.

            She also said all implanted devices are sutured in place until scar tissue eventually forms around them. She surmised your sutures broke early on, before enough scar tissue formed around your pump to hold it in place. She's said she'd seen ports used for venous access that had flipped, which rendered them useless, because they weren't sutured in place long enough for scar tissue to form around them and hold them in place.

            My doctor wanted to do my surgery this month, but I was able to put it off until the end of next month. Can you tell this is something I'm not looking forward to? But, I'm definitely grateful this one has lasted 7 1/2 years!
            Kimba

            “When you change the way you look at things, the things you look at change.” ― Max Planck

            Comment


              #36
              Update

              Hi All

              My pump refill went well this past Tuesday. We did talk about replacing the pump.

              I had this pump implanted June, 2008. June will be 6 years with this pump. My dr likes changing pumps after 6 years.

              The pump is telling us that the battery will die in 10 months. We are all not sure about the 4 month difference.

              I see the neuro surgeon on June 16 to see when we will make the change. They are also having me have some spine x-rays to see how the catheter is doing. I have had the same catheter since 1999.

              Take Care, Bob

              Comment


                #37
                Bob,

                Let us know if you figure out why there is a discrepancy now with the ERI date. That would be a big deal for someone like me, since my ERI date is August. Maybe that's why doctors want to change them much earlier than that date? Hope your catheter is fine, and keep us posted as to when your surgery is scheduled.

                Best wishes,
                Kimba

                “When you change the way you look at things, the things you look at change.” ― Max Planck

                Comment


                  #38
                  D-day

                  Hi all,

                  Well, it's finally time to get my pump replaced tomorrow. I'm leaning toward getting the smaller, 20 cc pump, but my doc said it's not really 1/2 as thin as you'd expect because they still need to get all the electronics in it. Said he'd have a Medtronics rep there to answer any questions and show me both sizes. Will be good to finally meet a Medtronics rep who deals with the pumps.

                  So, guess we'll see. But it was a bit scary to see how much it protruded after loosing a lot of weight when I was so sick a few years ago. Of course, don't expect to go there again anytime soon! I also realized I've had my pump 6 1/2 years, which is the life expectancy of them. Glad it made it this long despite the recall!

                  My new doc also mentioned something about also checking the catheter, but not sure what extent that will be. He explained most catheters are placed much lower than mine, in the epidural space, because there is more room around it and the chances of crystals (think that's the word he used) forming around it and causing problems are much less there.

                  I did look up what the estimated ERI meant with the pump, since that was never really explained to me. I guess that's the estimated time the alarm should sound indicating it needs to be replaced. Supposedly, it will still last a few months beyond that but it's highly recommended to get it replaced several months before that happens. I would think listening to that "European siren" would get darn annoying, anyway! Definitely a date we should pay attention to, especially if the date changes for whatever reason.

                  Not looking forward to another surgery, but it is time and I've pushed it out as far as I can. Besides, I would never want to go back to trying to treat my lower limb spasticity with oral medication again. At least it helps feeling like I have a good doc in my corner this time with the surgery. Here's hoping all goes well ...

                  And good luck to you with your surgery Bob, and hope you'll let us know when you have yours!
                  Kimba

                  “When you change the way you look at things, the things you look at change.” ― Max Planck

                  Comment


                    #39
                    Hi Kimba

                    I wish you the best with the new pump. I went this week to get the x-rays done on my catheter.

                    I am sure we will set my surgery date, when I see the neurosurgeon on June 16.

                    My dr is very cautious. She replaces her patient's pumps at 6 years.

                    Take Care, Bob

                    Comment


                      #40
                      Originally posted by Kimba22 View Post
                      Hi all,


                      Not looking forward to another surgery, but it is time and I've pushed it out as far as I can. Besides, I would never want to go back to trying to treat my lower limb spasticity with oral medication again. At least it helps feeling like I have a good doc in my corner this time with the surgery. Here's hoping all goes well ...

                      And good luck to you with your surgery Bob, and hope you'll let us know when you have yours!
                      Hey Kimba,

                      I just saw this. I had noticed on some other thread you mentioned surgery, and had wondered if it was a pump replacement.

                      As far as your sentiment about surgery versus no pump...I'm with you. I've had the original surgery, then two revisions, and still I tell the docs the recovery from surgery, can't even compare to living with the level of spasticity before the pump.

                      Let us know which pump you chose. When I had my revision to put my "roaming" pump back in it's place, the Medtronics tech told me Medtronics has an improved catheter. Of course, my feeling about the catheter is if it's working, I wouldn't want them to mess with it...two incisions to deal with instead of one, and less time in the hospital.

                      Hope all has gone well, and we'll be hearing from you shortly with an update.

                      Comment


                        #41
                        Hi, i have been happy with the smaller size pump, as I have it refilled with the higher concentration so it allows me to go the same max duration for the next refill.

                        Hope all goes well for you Kimba.
                        Keep us posted.

                        Comment


                          #42
                          Hi All

                          I saw my neurosurgeon last week. His office called this week. I will be getting my 4th baclofen pump on July 9.

                          If the previous 3 pump replacements are a guide, then this one should be non eventful. I have also kept my physiatrist & Medtronic rep in the loop.

                          As far as I know, I will be spending 1 night in the hospital. This is the normal protocol for my physiatrist.

                          I have my pre-op on July 1 & will find out all the details...The only down side to the pump replacement is that I will only be able to horseback ride twice in July. I am sure my neurosurgeon won't let me ride until September.

                          I will let y'all know how it goes.

                          Thanks, Bob

                          Comment


                            #43
                            Hi Bob,
                            Did you have your same neurosurgeon for each replacement?

                            Did you contact him at a certain date before the time listed on the printout showing how much battery time remains?

                            And you may have ansered this before - do the change the placement area or stay close to thte initial spot?

                            Hope all goes well & you'll be riding again soon!

                            Comment


                              #44
                              Originally posted by bluegiraffe View Post
                              Hi Bob,
                              Did you have your same neurosurgeon for each replacement?

                              Did you contact him at a certain date before the time listed on the printout showing how much battery time remains?

                              And you may have ansered this before - do the change the placement area or stay close to thte initial spot?

                              Hope all goes well & you'll be riding again soon!
                              Hi Blue

                              This will be the first replacement with the current neurosurgeon.
                              Previously, all my pumps have been replaced by a pain management dr.
                              Dr Smith moved my current pump in 2009. It had been implanted in 2008 by a pain management dr. That dr had placed the pump to close to the skin.

                              Actually, my physiatrist made the decision to replace the pump. Dr Abel works with Dr Smith..Dr Abel tries to change pumps after about 6 years of the pump being implanted...June 2014 is 6 years with the pump.
                              Dr Abel did notice that the pump battery due date is off by 3 months. But not an issue for me.

                              I know this time, my pump will be moved slightly. When Dr Smith moved it in 2009, he moved it deeper. I know Dr Abel would like it moved a little closer. In 2009, I had no problems when they moved it.

                              Take Care, Bob

                              Comment


                                #45
                                Best of luck to you, Bob!
                                Kimba

                                “When you change the way you look at things, the things you look at change.” ― Max Planck

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