Announcement

Collapse
No announcement yet.

anybody have a Baclofen pump?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    anybody have a Baclofen pump?

    My spasticity is increasing very rapidly. The neuro tried Baclofen and Tizanidine, but they both put me to sleep--and I mean that I was falling asleep while driving, VERY alarming. They didn't even seem to do much to help, either, at least not at the dosages I was willing to take.

    But the doc said a Baclofen pump into my spine wouldn't send the meds into my brain as much as pills and therefore less sleep-inducing. Here's my question: what is it like? does it stick out, is it external or internal? what are the benefits/problems? I don't know whether I should do it or not, so I'd be glad to hear from others about their experiences. Please help, thanks!

    #2
    Originally posted by Aqua10 View Post
    My spasticity is increasing very rapidly. The neuro tried Baclofen and Tizanidine, but they both put me to sleep--and I mean that I was falling asleep while driving, VERY alarming. They didn't even seem to do much to help, either, at least not at the dosages I was willing to take.

    But the doc said a Baclofen pump into my spine wouldn't send the meds into my brain as much as pills and therefore less sleep-inducing. Here's my question: what is it like? does it stick out, is it external or internal? what are the benefits/problems? I don't know whether I should do it or not, so I'd be glad to hear from others about their experiences. Please help, thanks!
    The Doc is right. The med is put right into the spine bypassing the brain. I had the same problem, falling asleep during the day. No problem at all since. The other good thing is your not getting as much Baclofin because it's going right to where you need it, your body doesn't need to break it down. It can take up to a year to get it adjusted.

    It's internal, left or right side of the stomach. Depending on your build it might stick out a little. I'm on the slim side and it does stick out. It looks like I have a hockey puck implanted, and that's what I tell folks. I had the Minn. Wild players sign a puck and I had it implanted. They do have two sizes. I have a cousin that has one, a little bigger build and you wouldn't know he has one

    You do go in for a trial where they inject Baclofin right into your spine to see how you respond. It takes about 8 hours.

    Comment


      #3
      Originally posted by Aqua10 View Post
      My spasticity is increasing very rapidly. The neuro tried Baclofen and Tizanidine, but they both put me to sleep--and I mean that I was falling asleep while driving, VERY alarming. They didn't even seem to do much to help, either, at least not at the dosages I was willing to take.

      But the doc said a Baclofen pump into my spine wouldn't send the meds into my brain as much as pills and therefore less sleep-inducing. Here's my question: what is it like? does it stick out, is it external or internal? what are the benefits/problems? I don't know whether I should do it or not, so I'd be glad to hear from others about their experiences. Please help, thanks!
      Your dr. is right. The med is in the pump, the pump has a catheter (small tubing) attached, and the catheter is inserted into your spine (the thecal sac...thus the name ITB pump...or Intrathecal Baclofen pump.) Everything is internal, so after implantation, you usually have two incision sites, one on your belly, one on your spine.

      I was sleepy all the time with oral baclofen, but worse, it did not relieve my spasticity. My bad leg wouldn't lift off the ground.

      With the pump, no side effects of baclofen, like sleepiness, etc. and it works. My legs almost have full range of motion and spasticity pain is gone. If your legs are weak, you have to allow for some spasticity in order to help you stand. The dosage you take orally, versus the dosage you have delivered to your spine, is incredibly higher...I took 80 mgs a day orally, that's 80,000 micrograms of baclofen. When the med is delivered to the spine, it's delivered in micrograms, most folks on this board, seem to have their micrograms dosage set between 100 and 200. So that's 200 micrograms delivered directly to the spine, with no side effects to the rest of your body, versus 80,000 micrograms taken orally with whole body symptoms like fatigue, etc.

      Depending on your size, frame, and where the neurosurgeon decide to place the pump influences whether it sticks out or not. I recently had to have mine moved, and in it's new location it sticks out more than it did in the other location, but I can hide it with the style of clothing I wear.

      As far as controlling spasticity...it does the trick for me. They can adjust the med dose if you're experiencing more, or less spasticity. They program it by holding a little "reader" device over the pump, and then program it for the dose you need. You get refills at regular intervals...the amount of time between refills depends on how much baclofen you are using per day.

      A neurosurgeon does the surgery, but you are under the care of a pump doctor (mine is a physiatrist) for all issues concerning the pump and it's operation.

      I found it helpful that I could "test drive" the med to see if it worked. They measure you spasticity, give you a dose of the med intrathecally, and then watch you for the next several hours to see how your spasticity is responding to the baclofen.

      As to cons...well I'm had a couple complications, mostly with migration of the pump and the catheter. That meant an additional surgery to get things back in place, but minor bumps compared to the relief I get from the pump.

      If you're neuro is recommending it...take the first step and get the test, then you'll know if it makes a difference for you.

      Comment


        #4
        Hi aqua10,

        I too, have a baclofen pump, because my spasticity wasn't being controlled with oral medications. Both 90stangg (got a good chuckle from your signed hockey puck comment!) and rdmc already gave you good information.

        Mine does stick out, but I am more slender, and I have the larger sized one implanted. But, another option for you might be the smaller pump. I have always had to get mine refilled with new baclofen every 3 months, my docs believe it starts to loose it's effectiveness after 90 days. Getting the pump has been a very effective treatment to help control my spasticity. I would also recommend the trial to see if it helps you.

        Here are a few links that might help to answer more questions you have:

        http://www.medtronic.com/patients/se...icity/therapy/

        http://www.webmd.com/multiple-sclero...-baclofen-pump

        Best Wishes,
        Kimba

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

        Comment


          #5
          Thanks a million, everyone!

          Phew. I was picturing something larger and more external. It will show, but I hide that area anyway (all those permanent lumps from injecting Copaxone!) so I can deal with it. My neuro didn't mention the "trial run" but I definitely want that first, so thanks for letting me know about that possibility.

          Having MS is a full-time job, isn't it?

          Comment


            #6
            Just learned about the pump

            Hi Aqua10, I have had the pump for awhile now. I have a small one and I don't ever use up the medication they put in it. My trial they did was amazing. I was able to stand up fully after I woke up and could move around. The amount you need compared to oral is so small it is crazy. I can go in at any time and my pain Dr. can adjust the pump. I have had it lowered and raised at different times. It has been nice.

            I was just recently to my Nero (my 3/4th one now) Hard to fine one on the same page that knows anything. But she was going to have me get a new MRI and to find out you can't get one once the pump is put in. I was never informed of this ever.

            I had an MRI when first dx in 2005 (glowed like a x-mas tree), and then the next one I got sick from the dye contrast and I hate the small space so never wanted to go back. But now that things have been getting worse I figure we should take a look and now I can't. I have never been on an MS modifying drugs either. My kids keep me going.
            WE LIVE WE LEARN LIFE GOES ON

            Comment


              #7
              Hi Motherof5

              You can still do MRI's with a baclofen pump. When you go to the place where you are having the MRI done, just give them the card Medtronic gave you about your pump.

              The pump actually stops during the MRI & then restarts once it is over. You will be told to see your pump dr after the MRI. This is just to make sure the pump has restarted.

              I have had a pump since 1999 ( not the same pump...LOL) & have had many MRI's over the years.

              Take care, Bob

              Comment


                #8
                the hospital that I go to for my MRIs has a team that is called the IV team and they will see me before and after my MRI. They get all of the information that they need (dosage rate and such) before hand and they compare it to what the pump is doing afterwards. If they are the same (and they always have been) I am free to go.

                "But the doc said a Baclofen pump into my spine wouldn't send the meds into my brain as much as pills and therefore less sleep-inducing. Here's my question: what is it like? does it stick out, is it external or internal? what are the benefits/problems? I don't know whether I should do it or not,"
                instead of measurements of the dosage that you need in milligrams, it is so small that it is measured in micrograms.
                The pump does not stick out, it is solely internal.in some people(like myself) will it is not even noticeable.
                The only problem that I had is that initially the dosage was set to high and my legs (that is where I am affected) were like wet noodles. After a little bit of "tweaking" everything was corrected.
                hunterd/HuntOP/Dave
                volunteer
                MS World
                hunterd@msworld.org
                PPMS DX 2001

                "ADAPT AND OVERCOME" - MY COUSIN

                Comment


                  #9
                  Originally posted by BobOP View Post
                  Hi Motherof5

                  You can still do MRI's with a baclofen pump. When you go to the place where you are having the MRI done, just give them the card Medtronic gave you about your pump.

                  The pump actually stops during the MRI & then restarts once it is over. You will be told to see your pump dr after the MRI. This is just to make sure the pump has restarted.

                  I have had a pump since 1999 ( not the same pump...LOL) & have had many MRI's over the years.

                  Take care, Bob
                  Thanks Bob,

                  I was hoping you would see this too. I was going to ask you just didn't know how to find you on here since it has been so long.. I learned about the pump from you to begin with, so I figured you would know if my Nero was right or not. It was something that came up for her when she went to request the MRI I guess. The pain Dr I go to is in a different location from the Nero, so I assume I will have to have it done closer to the other one since the one refuses to deal with my pain pump since "they didn't put it in". I hope to move in a few years and worry about finding someone to take care of the pump when I do. Sorry about the wrong information I posted. Good thing you are out there BOB!
                  WE LIVE WE LEARN LIFE GOES ON

                  Comment


                    #10
                    Originally posted by Motherof5 View Post
                    The pain Dr I go to is in a different location from the Nero, so I assume I will have to have it done closer to the other one since the one refuses to deal with my pain pump since "they didn't put it in". I hope to move in a few years and worry about finding someone to take care of the pump when I do.
                    Hi Motherof5,

                    Here's Medtronic's link in regards to medical procedures: http://www.baclofenpump.com/living/d...ures/index.htm

                    I have switched doctors for my pump three times, either because of distance or insurance issues. Initially, I was always told (by the office staff) the new doctors most likely wouldn't accept me because "they didn't put it in," then after explaining my situation I've always gotten in for a consultion with the doctor and was accepted as a new patient. My PCP's have also always been willing to be an advocate with the new dr. on my behalf, as well, but so far it has never really turned into an issue. I do happen to think pain management doctors have more concerns about taking on another doctor's pump patient because it is also used to deliver powerful pain meds, like Morphine or Dilaudid.

                    If finding a new doctor ever is a problem, I suggest calling Medtronics right away. Since people move all the time and Baclofen withdrawal is a medical emergency, I would only assume they would put you in touch with someone who can help you.

                    Good luck with your MRI. Something else I remember reading somewhere was that it can help to wear a binder around your pump during the MRI (since some patients experience a slight tugging sensation during the scan). It didn't bother me at all, but might be something you want to consider for your first MRI.

                    Best Wishes,
                    Kimba

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

                    Comment


                      #11
                      Originally posted by Kimba22 View Post
                      Something else I remember reading somewhere was that it can help to wear a binder around your pump during the MRI (since some patients experience a slight tugging sensation during the scan). It didn't bother me at all, but might be something you want to consider for your first MRI.

                      Best Wishes,
                      Hey Kimba,

                      I've worn a binder during MRI and I've gone without. I haven't noticed a huge difference.

                      Mother of 5, wonder who was so ill informed that they didn't know you could have an MRI with a pump. I did call Medtronics when I was told I was going to have a MRI in a 3.0 Tesla machine...I'd always had 1.5 Teslas before. They said the 3.0 shouldn't be a problem.

                      After the MRI, while getting dressed, I've heard the European ambulance alarm. But by the time I've arrived at the physiatrist for a check, it's rebooted itself. One time though, I went for a check after an MRI, they checked it, and everything was okay...I got home, and the darn alarm sounded. I called the physiatrist and they said just to be on the safe side, come back again...and of course by the time I got back, it was on again.

                      My physiatrist used to be about 5 minutes from where I have my MRI's done and another 5 minutes to my house...how convenient that was. Now they're about a 20 minute drive, but in the opposite direction of home...but still not too bad.

                      It is true, not a lot of dr's or medical personnel are familiar with pumps. Sometimes when I've been to a new dr. or PT person, even when in the hospital, the folks have never seen a patient with one. If a medical professional is curious, I offer to let them feel the pump, and they always take me up on the offer. Reminds me of when I was pregnant

                      Comment


                        #12
                        Originally posted by rdmc View Post
                        Hey Kimba,

                        I've worn a binder during MRI and I've gone without. I haven't noticed a huge difference.
                        Hi rdmc,

                        Same here. I was bound up with a couple of ace bandages the first time I had a MRI. Kept waiting for some sort of weird, tugging sensation there, but felt absolutely nothing! (Of course, I was also wondering if I'd feel something with my new pacemaker.). Good thing MRI's don't make me anxious, otherwise I probably would've been a nervous wreck! Glad to report I didn't feel anything with either device.

                        It is true, not a lot of dr's or medical personnel are familiar with pumps. Sometimes when I've been to a new dr. or PT person, even when in the hospital, the folks have never seen a patient with one. If a medical professional is curious, I offer to let them feel the pump, and they always take me up on the offer. Reminds me of when I was pregnant
                        Too funny. Feel the exact same way!
                        Kimba

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

                        Comment


                          #13
                          Hi aqua10,
                          All my fellow pump partners have given you all the info

                          Just to add, I too have a pump, the smaller size and am very happy with it. The trial is mandatory to confirm if you are a candidate first.

                          The key is to ensure you have a good/experienced neurosurgeon if you go forward with it.

                          Good luck.

                          Comment


                            #14
                            MRI & Baclofen pump

                            I would definitely want the smaller pump because I'm pretty scrawny. I hadn't even thought about MRIs! Glad to hear it's still possible. Thanks to everybody--I learned a lot and now I feel armed to do that pre-pump test.

                            I hope it works--I really have a hard time standing up straight because of the spasticity. I'm told that the dmd's have no effect on spasticity, which was an unpleasant surprise.

                            Comment

                            Working...
                            X