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The end of my story with my Baclofen pump, for now

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    The end of my story with my Baclofen pump, for now

    Hi All

    I am back. As y'all know, I have had a issue with my pump flipping. The past 2 refills went fine. My next pump refill was to be Feb 27. I didn't make it.

    At work on Feb 1, I started getting full body itchiness. After I got home, the spasms started. The next morning I did go to TGH per Dr Abel. Dr Abel was doing clinic at USF, across town. She did see me and we did a bollus dose of liquid baclofen. It did calm things down for awhile, but I knew it would be short lived. She went back to her clinic. Everyone was watching me..LOL. I even had 1 dr stay with me until Dr Abel got back. By that time, 8pm, it was me, the dr and the

    I was then admitted through the emergency room, on a Friday night. I finally got to a room in emergency around 10 pm. Then a room move to the 9th floor neurosurgery around 1:30 am.

    That was day 1....I could write for days on my adventure. The following 10 days involved trying to find out what was wrong. Because of me coming in Friday night, we just tried to make me comfortable until Monday. Over the days, my dose was increased 3 times. We went from 119 to 170. We also did x-rays to see how the catheter was. Dr Abel did see a little kink and also thought it could have a micro leak.

    While all this was going on, I was lucky to not be tethered to the bed. I had my own little corner in the room. I was up and about. I also had a great view of Harbour Island from my room....LOL

    As the week went on, we tried to do a dye test on Wednesday morning. That didn't work. They got the needle in to the port but couldn't get any fluid out.

    On to plan C, Friday morning we replaced my catheter. The old catheter was 19 years old. The surgery went well. My spasms are now back to my baseline. The itching has also gone away.
    I am dealing with some headaches, which is normal.

    I came home sunday afternoon. I am walking just fine. I will probably be out of work until we take out the staples. That will happen feb 20.

    I knew we were going to have to deal with the catheter, sometime before my pump is replaced in 3 years. I actually was holding on to time just in case. I am going to use it, but no problems. In June, I get another 4 weeks of vacation...Yippee!!

    Take Care, Bob
    Last edited by bobtheisen; 02-16-2018, 09:40 PM.

    Wow Bob that sounds kind of scary!

    I'm glad they figured out what was wrong.

    I'm on my 2nd baclofen pump. The first one lasted ten years and my second one is six yrs old and my doctor mentioned that we may have to replace it later this year. I don't think they changed the catheter when they changed the first pump so it's over sixteen years old. That kind of worries me after hearing your story!

    Well I'm glad your ok and I hope your pump doesn't give you any more trouble!

    Take care. Eileen


      Thanks Eileen.

      I am on my 4th pump and the third generation of the pump. The last time we changed my pump in 2014, they were thinking about changing the catheter. They did x-rays and a dye test, everything was fine. I am feeling better each day. I am dealing with some head pressure but nothing like a true migraine. That keeps getting better each day. I should be back to work by the end of the month.
      That is something they check each time I get a new pump. I will have to do that in 3 years.

      Wishing you the best, Bob


        Hi Bob - scary indeed and what an ordeal! Sorry you had so many problems, but glad to hear you're doing better. Take care of yourself.
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator


          Hi Bob,
          Haven't been on the board for a while, and just seeing this.
          Sorry to hear all you had to deal with, and glad you are doing better!

          Do you think the flipping caused the catheter kink? Or vice-versa?
          Was the body itching extreme and all over?
          Are your headaches from the bolus/surgery?

          I had the dreaded spinal headache after my first pump surgery and had to stay lying down. No one ever warned me before hand , but I should have thought about it as I had a spinal tap done many years ago and was cautious to drinking lots of water and lying down to illuminate getting it, which worked well!

          Hope you're still doing well and now I guess at least you have the new (improved) catheter.

          It just raises questions as to when you really know we need a new catheter.


            Hi Blue

            I am doing much better. I see Dr. Abel tomorrow for a follow up after the surgery. I will also find out my next pump refill. My pump was refilled during the catheter surgery. It was a bonus.. LOL

            I am now back to work and things are going well.

            The flipping of the pump was probably part of the problem. The pump flipping also happened due to me losing a lot of weight. I have lost over 40 pounds in a year and a half. My Medtronic rep suggested we check the catheter after it first happened.

            The body itching is full body. My spasms were also out of control at times including both legs going at the same time.

            We did the bollus dose through my pump. It helped with both symptoms but I knew they were going to come back. No headache for that. As for the surgery, they wouldn't let me be higher than 30 degrees in bed after the surgery. I was fine the next day. I did have, what I call head pressure, for about a week. It was nothing like the migraines I had when I got my first pump.

            My catheter was 19 years old. I knew it was time. Each pump I got we always checked the catheter. It was always working fine.

            Take Care, Bob


              Hi Bob,

              Sounds like you've had quite the adventure. I'm glad you're feeling better and on the mend.

              Your itchiness and other symptoms remind me of what my physiatrist says.. If your Baclofen
              flow is impeded for any reason, you won't have to wonder if it is, you'll know it is because
              of the return of spasms, sometimes even worse than pre pump level. Of course, when that
              happens we will end up in a hospital.

              Kudos for "dealing" with a 10 day hospital visit.


                Hi RDMC

                I am sorry I have taken so long to respond to you. Thanks for the good thoughts.
                I knew what was going on. I had something similar happen about 10 years ago. We moved my pump because it was too close under the skin.

                It was done out patient and I came home. About 7 hours later, I had the itchiness and the spasms. They went in 2 days later to investigate. It was the first time my current physiatrist was seeing me. She was supposed to see my before the first surgery.

                She changed out the liquid baclofen from the " compound" to the "real stuff". She was amazed how good I was doing the next morning.

                This time, we tried upping my baclofen dose 3 times. It didn't touch the spasms or itchiness to get me down to my baseline. However, I did notice an effect on my walking. By the time my dose was up to 170, I had gotten an hitch in my ankle when I took a step.

                They have never told me if they found a definte reason for what happened. All I know is everything is working great.

                Take Care, Bob