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3 wks post pump surgery & still can't decorate the tree w my daughter -- please help

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    3 wks post pump surgery & still can't decorate the tree w my daughter -- please help

    Hi all, itís Maggie. I just need to include a caution before my post to all POTENTIAL PUMPSTERS: PLEASE DONíT LET WHAT I SHARE KEEP YOU FROM MOVING FORWARD WITH THE PUMP YOURSELF! (Iíve combed through all the pump posts I could, and I havenít found any about the pump failing to help Ė so I donít want anyone reading this to back away from a treatment with so much potential).

    Iím so sorry to keep posting with the same crisis, which is that I no longer know how to live with the agonizing pain from my spasticity (I have come to a point where the disability is fine with me Ė itís the pain that I canít bear).

    The last time I posted I was devastated because my Baclofen pump surgery had been canceled indefinitely due to a pump shortage at the Medtronic plant in Puerto Rico, and I didnít know how to cope with the pain without being able to count down to the date it would be relieved by getting surgery for the pump.

    Now Iím posting under very different circumstances, but for the same reason. I had my pump surgery 3 and a half weeks ago, but it still hasnít worked to relieve my pain/spasticity.

    Based on my experience at my pump trial, I truly believed that the surgery would be a ďsilver bulletĒ (or silver hockey puck!) for the pain (after over 4 years of trying to get help) Ė AND, on top of that, quite possibly give me the chance to be mobile again.

    At the trial they injected 50 micrograms into my spine, and within an hour I was almost completely pain free for the first time in 4 years. I could stand up straight for longer than a minute for the first time in 4 months, and I could walk fluidly and without massive effort for the first time in 2 years.

    When I talked to the physical and occupational therapists and my PMR doctor during my post-trial evaluation, my spasticity scores were down everywhere from a 4 on the Ashworth scale to a 1 or a zero, and they said they were confident that what the trial did temporarily the surgery would do permanently Ė relieve my pain AND, gradually, in combination with PT, help to restore my mobility.

    But itís now 3 and a half weeks post-surgery, and Iím still crippled by the same level of pain. The post -surgical pain was a piece of cake compared to the spasticity pain, and at that point I still thought it would work.

    Iíve had my dose adjusted twice Ė from 50 micrograms (which is what I was on at the time of the trial) to 80, and then again from 80 to 120 Ė by a PA I'd never seen before -- and it hasn't made a dent.

    I am heartbroken. But beyond me, my sweet husband has been hoping and praying and my sweet daughter has been trusting that the surgery would work.

    Has anyone else had this experience Ė with the ITB working during the trial but not working after the surgery? If so, what did you do?

    And if not, please tell me if you have any advice for me (both to help with the pump in the long-term and as a stop-gap measure for the pain during the holidays). Two weeks post-surgery without relief I started to think again that I am a hopeless case, but I have to hang on for my daughter and husband, and any words of encouragement you can give me will help.

    Please know that I am not a wimp (which sounds silly). Itís just that I have been waiting for over 4 years and before the surgery the pain had gotten so bad I couldnít think straight Ė it wasnít just my body but my mind Ė and because the pain hasnít been relieved I still canít think.

    But I know that I promised my daughter that Iíd be able to decorate the tree this year after my surgery.

    I made it a rule never to make promises to her about my MS, but after the trial and after I met with the surgeon and his PA they all told me Iíd be able to decorate the tree after my surgery, and I broke down and told her the night before I went in what a great thing the surgery was (because she was worried) and that my doctors had said weíd be able to decorate the tree afterwards.

    And now Iím back to where I was, crumpled in pain, unable to think straight or stand up for more than a minute Ė and sheís still waiting for us to decorate our tree.

    I made a promise I couldnít keep Ėand itís different for adults Ė but for a little girl watching her Mom in pain -- I donít know what to do any more.

    Please help if you can. Thank you so much.

    #2
    Pump attached?

    Hi Maggie.
    I'm so sorry you're having trouble with your pump. I had a similar problem with my pump. I don't have pain but I do have a lot of spasticity. After I got my first pump I still had a lot of stiffness and my doctor kept upping the dose with no relief. Finally my doctor ordered an x-ray and low and behold the catheter was coiled up next to the pump. Once they reattached the catheter the pump has worked great.
    Good luck and I hope this helps.
    Ei

    Comment


      #3
      Hi Leenyi, thank you for responding! That was the first thing I asked the PA I have been seeing since my surgery for my dose adjustments. She said if there was something wrong with the catheter or the pump I would be in Baclofen withdrawal -- although when I think about it, if it was never attached properly in the first place, that would not be the case.

      I think I need to see someone who is better able to help me with this situation, or at least give better explanations!

      Comment


        #4
        Yeah I think my catheter must have come unattached or never been properly attached from the start. I didn't go through withdrawal. When they reattached the catheter they set the pump really low since my body wasn't used to getting the baclofen. I was practically O.D.ing! I was so loose my legs were like noodles. The weird thing is I think I went years with it unattached. He just kept upping the dose!!
        Demand an X-Ray!!!
        Ei

        Comment


          #5
          Hi Leenyi, I wish I had demanded an X-ray when I was last there for the second dose adjustment, from 80 to 120. That was a week ago.

          But she told me it was normal to not have pain relief yet from the pump -- she said it was because my dose wasn't high enough yet to be "therapeutic" for me and that I would need to keep coming in for adjustments until it was.

          The problem is that all of my care for the pump is 3 and a half hours away from my home, and I was scheduled for my 3rd dose adjustment this past Friday. But there was a huge winter storm, and my husband and I had to turn back -- we'd gotten up at 4:00 am to allow 2 extra hours to get there, and we might have made it, but a truck overturned on the expressway and with the traffic backed up there was no way.

          When I called to cancel they told me there were no other openings to have my dose adjusted until December 27, and in the meantime there is no one I can see for help with the pump .

          But when I go in on the 27th I will ask for an X-Ray -- thank you so much for your help!

          Comment


            #6
            Originally posted by Maggie2015 View Post
            When I go in on the 27th I will ask for an X-Ray -- thank you so much for your help!
            My maintenance dose is over 550 mcg so 50 mcg wouldn't relax my pinky. However, since you responded to the 50 mcg trial dose it stands to reason you should respond to a similar dose with the permanent implant.

            You live so far from your medical team that you really need to help steer your care:

            - If I was in your situation, I would immediately request a dye study. I would definitely try to coordinate this in advance. They will inject dye and then watch it under fluoroscopy to detect problems. The dye study is more comprehensive than an x-ray.

            - You could also have your doctor order an x-ray and have it done near your home. That way it could be read BEFORE your appointment.

            - I am NOT trying to alarm you, but familiarize yourself with both underdose and overdose symptoms. If you are having catheter problems either situation is possible.

            - I would call your pump manufacturer and see if there is anyone closer that might be able to take over your care.

            I'm not on very much these days, but I will try to check on this thread to see how you are doing.

            Comment


              #7
              thank you!

              I just wrote back on my other thread -- but I also want to thank you for telling me how much you had your dose increased in the past because that gives me a baseline to compare what's been happening with me.

              And for saying that you would check in on me.

              I read all your stories about the pump before I got it -- and I have faith that when it's done properly it will work -- it's just that it's not being done properly -- and I was so far gone with spasticity pain before the surgery that my body just can't tolerate what's happening now.

              I will call Medtronic tomorrow to try to get some help from them; maybe they will convince my PA to listen! Oh, fingers crossed.

              I am more low key than usual because of the 5 mg Valium from the ER. I used a smiley face emojii! Hey, that's something!

              Maggie

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