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    Baclofen Pump for Spasticity...

    So I was just wondering if anyone has had experience with the Baclofen Pump for Spasticity caused by MS...

    I would really like to get some insight on personal experiences with it, if possible.

    Spasticity is one of my biggest problematic symptoms and I have tried different oral medications for it.

    For those of you who have the Baclofen Pump (ITB), what made you choose the baclofen pump?
    I've read a lot of information on the Baclofen Pump website... but I wanted to have a conversation with everyone else about this.

    Thank You!
    Ashley Ringstaff
    Ringer1319/RingpOP
    MSWorld Volunteer
    Living with MS since 8/30/10

    #2
    Originally posted by RingpOP View Post
    So I was just wondering if anyone has had experience with the Baclofen Pump for Spasticity caused by MS...

    I would really like to get some insight on personal experiences with it, if possible.

    Spasticity is one of my biggest problematic symptoms and I have tried different oral medications for it.

    For those of you who have the Baclofen Pump (ITB), what made you choose the baclofen pump?
    I've read a lot of information on the Baclofen Pump website... but I wanted to have a conversation with everyone else about this.

    Thank You!
    Hi RingpOP,

    There are quite a few of us on this forum who have pumps. Since most people considering the pump have very similar questions, I've linked a couple of threads for you to check out. They may answer your questions, they may not, and feel free to ask any specifics. We, pump users are a friendly lot and we don't mind answering questions because for most of us the pump has been a wonderful addition in our MS journey.

    http://www.msworld.org/forum/showthr...=baclofen+pump

    http://www.msworld.org/forum/showthr...=baclofen+pump

    Comment


      #3
      I am going for it

      Have tried every muscle rexalers and have maxed out on all. Meeting with surgeon next week to set up placement, test dose will be done day before, hope it works! I did talk to a Medtronic ambassador which helped greatly, he has had pump since 1999. Look into that! Good Luck!

      Comment


        #4
        I have one, and I am so very glad. It has made moving my limbs (legs) so much easier. At one time, my 300 pound cousin had a hard time getting my legs in the truck, I used to tell him that "they won't break, just bend them and make them fit". Any further information on this topic I would be more than happy to share.
        hunterd/HuntOP/Dave
        volunteer
        MS World
        hunterd@msworld.org
        PPMS DX 2001

        "ADAPT AND OVERCOME" - MY COUSIN

        Comment


          #5
          Hi Ashley

          I started ITB( Baclofen Pump) therapy due to severe spasticity in my right leg.

          With the liquid baclofen going in to the spinal cord, I am actually using less baclofen than when I was taking oral baclofen- 117 mikagrams vs 120 milligrams
          A mikagram is 1,000th of a milligram

          The other thing I like about the pump is that the dosing is individualized for each user. You can receive a constant dose. You can also have the dose set up to get more liquid baclofen at certain times.

          My dosing is 117 mikagrams from 7am- 11pm & 119 mikagrams from 11pm- 7 am. We did this because I do have a little spasticity at night, while I am sleeping

          Getting a pump has had a positive impact for me.

          Thanks Xrayeyes, it was nice talking with you. I wish you the best with the Baclofen pump

          Take Care, Bob

          Comment


            #6
            Thanks for the replies everyone...

            I am going to do more reading on the links shared, and also speak to my neuro about this, to see if I should see a Spasticity Specialist.

            For those of you that have had the pump installed... I know it's done by a surgery. Last time I had a surgery (getting a cyst removed from wrist) it through me into a flare... However I wasn't on any medications at the time. I'm on Tysabri now.

            Did the implant surgery cause a flare-up or any increased symptoms?
            Ashley Ringstaff
            Ringer1319/RingpOP
            MSWorld Volunteer
            Living with MS since 8/30/10

            Comment


              #7
              Hi Ashley

              I haven't had any MS issues with the pump surgeries...I have had 4 pump's installed along with a few additional surgeries...one to have my pump moved & one to fix the catheter after I feel in the shower.

              I have always been mobile after the surgeries.

              Take Care, Bob

              Comment


                #8
                Hi Ashley,

                There's some great collective knowledge here (along with experiences) from those with pumps on this site. If you think of other questions, don't hesitate to ask! Although I would have probably gone for one anyways when I first got mine, it would've been nice to learn some things from others who already had one.

                Originally posted by RingpOP
                For those of you who have the Baclofen Pump (ITB), what made you choose the baclofen pump?
                My MS Specialist finally sent me to a Spasticity Specialist after high doses of oral medications still weren't effectively treating my spasticity.

                Besides still having quite a bit of "tone" left in my legs, I had a lot of spasticity in my back. Both hurt, but especially my back. I'd even tried Botox injections, with limited success. I was also starting to have some dental problems, thanks to one of the side effects of the oral meds - dry mouth. After my Baclofen pump trial, my back pain completely vanished. Now that in itself was a great motivator!

                The pump has really helped reduce the spasticity in my legs, but no so much with my back. Mainly because the dose that helped my back was way too high for my legs, rendering them useless. Dry mouth has become a thing of the past, and I no longer have to deal with the cycle of increasing spasticity throughout the day as oral medications begin to wear off . Like Bob said, your dosing schedule with IBT is very customizable, allowing up to 13 changes a day. http://www.baclofenpump.com/living/d...rapy/index.htm

                For those of you that have had the pump installed... I know it's done by a surgery. Last time I had a surgery (getting a cyst removed from wrist) it through me into a flare... However I wasn't on any medications at the time. I'm on Tysabri now.

                Did the implant surgery cause a flare-up or any increased symptoms?
                Sorry to hear about the flare you had with your last surgery.

                I was sore after the initial surgery (when both the pump and catheter were placed, but my MS didn't act up. But when the pump had to be replaced (the maximum battery life of the pump is 7 years), I had problems. That's a less complicated surgery than the first one, but guess my MS didn't get the memo ... (But, I was told a lot of scar tissue had formed around my pump, causing it's removal to be more invasive than expected.) I was on Betaseron during the first surgery, and Tysabri during the last.

                I have had quite a few surgeries since my diagnosis, and didn't have relapses after the vast majority of them. But because of my history with a couple of bad relapses after two of my surgeries, I also had concerns and addressed them with my surgeon prior to my pump's replacement.

                Try to be proactive whenever possible, and discuss your (valid ) concerns with your doctors. Your neurologist will most likely tell you to stay on Tysabri. Mine told me that was the best advice he could offer to try to prevent a relapse. Sometimes the benefits of a surgery outweigh possible risks (although I'm first to admit they can really, really bite.) If it's scheduled as day surgery (my first pump surgery was), ask about being kept overnight afterward for observation. Depending on individual needs, some people have even been scheduled to go to inpatient rehab afterward.

                Most surgeons aren't familiar with MS (and not everyone who has a pump has MS), so it never even dawns on them we might have a relapse afterward. I would've been right back in the ER the night of my pump replacement, if not for addressing all my concerns with my doctor prior to my surgery. He had opted to keep me overnight for observation, instead of sticking with his initial plan of day surgery. (I could've always gone home early if I had wanted to ...)

                Good luck whatever you decide!
                Kimba

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

                Comment


                  #9
                  Ashley, i did not experience any new symptoms after the first or the second pumps were implanted. keep us up to date on your journeys
                  hunterd/HuntOP/Dave
                  volunteer
                  MS World
                  hunterd@msworld.org
                  PPMS DX 2001

                  "ADAPT AND OVERCOME" - MY COUSIN

                  Comment


                    #10
                    Here's my pump experience. I could only hope that others have the same level of benefit as I have. It's been nothing short of a miracle in every way. Since spasticity was 99% of my problem that was the approximate benefit. I have to rebuild my endurance, but most other things are back.

                    http://www.msworld.org/forum/showthread.php?t=135229

                    Comment


                      #11
                      pump only goes so far

                      i've had a pump for 6 months, and finally got it adjusted right. i'm mostly spasticity free. but when it gets hot, or cold, the spasticity comes right back. i can take oral baclofen as well, but it makes my head foggy, and that's why i got the pump. so nothing is perfect. there is a point between no spasticity and not being able to walk.
                      life is uncertain,
                      eat dessert first!

                      Comment


                        #12
                        Catheter ?

                        Could the catheter be in the wrong place for one who has just mobile problems or it don't Mather

                        Comment


                          #13
                          Baclofen pump

                          Hi there. My name is Sigrún María and I'm from Iceland. I don't have MS, but I have severe spasticity due to my spinal cord injury. I'm scheduled to have a Baclofen pump inserted in the next few months, and I have a couple of questions I was hoping I could get answers to. First off, is it possible to lay on your stomach with the pump? How long did you stay in hospital? Was the recovery long?

                          I hope to hear from some of you!

                          Comment


                            #14
                            Originally posted by Mogli7 View Post
                            First off, is it possible to lay on your stomach with the pump?
                            How long did you stay in hospital?
                            Was the recovery long?
                            Sigrún María welcome to MSWorld. There are two pump sizes, 20 and 40 ml, and the bigger one sticks out further than the 20. Even with the 40, I personally have no position limitations due to the pump.

                            There are plenty of people that a pump installed in an outpatient surgery. I had complications, not pump related, and was in the hospital 3 total days.


                            Consider asking your doctor for their post-op instructions. I felt so much better after the pump that recovery seemed nearly immediate. Some people do so well they are able to return to work the day after surgery.

                            Most people have soreness/pain for up to two weeks after the procedure. You will not be able to submerge in water (bath, hot tub, swimming, etc) until your surgery site completely heals. There are bending, lifting, twisting limitations for 2-3 months depending upon your doctor.

                            Comment


                              #15
                              Originally posted by Marco View Post
                              I have to rebuild my endurance, but most other things are back.

                              Hi Marco!

                              I know that the post is from 2014, as is the link you provided. Can you tell us how the endurance is today? Maybe share your routines to get strength back etc.

                              Originally posted by Marco View Post
                              Since spasticity was 99% of my problem that was the approximate benefit.

                              I am wondering how close to normal (pre-MS) you have come five years later. Or has MS gained a foothold outside of the spasticity relief?

                              Jer

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