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no trust in PA -- what is therapeutic dose for Baclofen pump for you?

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    no trust in PA -- what is therapeutic dose for Baclofen pump for you?

    Hi all,

    I am sorry to keep asking questions -- I just started a thread last night because I am 3 and a half weeks post pump surgery and my Baclofen pump isn't working to relieve my pain from spasticity (which is constant, chronic, excruciating and disabling).

    I heard back from Leenyi and she suggested that the catheter for my pump might not be properly attached.

    I actually asked my PA if that was a possibility when I saw her for my second dose adjustment last Monday Dec. 11, and right away she said that couldn't be the problem because if that were the case I'd be in withdrawal from Baclofen.

    Then she said that the reason the pump wasn't working yet was that I wasn't yet at a "therapeutic dose."

    I had already seen her once before for my post-surgery follow-up/first dose adjustment on Monday Dec. 5 and at that time I said I was worried because during the pump trial I had been on 50 micrograms and I'd been almost pain-free for the first time in 4 years and able to stand up straight for the first time in 4 months.

    She said 50 micrograms injected in the spine was different than 50 micrograms over the course of a day, and that I would just need to keep coming back for dose adjustments because it could only be done in increments -- otherwise I might "fall into a coma."

    So with the first dose adjustment she moved it up from 50 to 80 micrograms. At that point I asked if she thought it would make a difference at all and she said, "everyone responds differently -- if it doesn't you'll just have to keep coming back."

    I explained that we live 3 and a half hours away and that after the trial on Sept. 19 we had asked my PMR if after I had the surgery we could be referred to a facility 45 minutes away from us for dose adjustments and refills, and he'd told us we definitely could as soon as we came in for our post-op follow-up. The surgeon told us the same thing on Nov. 17.

    [I had read all of your stories and planned ahead so that we wouldn't be too far away from care for my pump. When we have to drive 3 and a half hours each way to get to care, my husband has to take the day off from work and I have to be cramped up in the car for 7 hours, which makes my spasticity pain much worse (even though I expected to be out of pain for the most part, I know better than to sign up for anything that might aggravate it). Add to that problems with the weather (during the winter), and I thought: Yikes! We can't risk being that far away for pump maintenance].

    So I asked the PA for the referral to the facility that my PMR and surgeon had promised I could have at my follow-up appointment, and she said, "you can just contact them on your own. The only reason you'd need a referral would be for insurance purposes, and if that is the case it wouldn't come from me; it would come from your PCP."

    I thought that this seemed "off," but I was in so much pain and just hoping that the 50 to 80 microgram adjustment would help a little, and my husband and I scheduled 2 more appointments with her to have the dose raised before the holiday.

    The next day (Dec 6)I called the facility myself as she'd instructed and they said they couldn't take me without a referral from her -- which is what I'd thought in the first place.

    So I called her office the same day, and they said they would let her know about the referral. We came back for the 2nd dose adjustment on Mon. Dec. 11 (the 50 to 80 micrograms still hadn't made a dent) and that's when she said my Baclofen pump couldn't be malfunctioning because otherwise I would be in withdrawal. She raised my dose from 80 to 120 and said that when I came back on Friday Dec. 15 if that hadn't made a dent she'd raise it from 120 to 170, and if that didn't work we'd just have to keep coming back until we reached my "therapeutic dose."

    At that point I reminded her about the distance and asked about the referral to the facility close to us, and she said she was working on it and would have it ready when I saw her on Friday. I asked if we could have another appointment with her to adjust the dose before the holidays if it didn't work because I was in such terrible pain and wanted desperately to do everything I could to be able to decorate the tree with my daughter.

    She said she was "open" the week before the holidays, but that we should wait until Monday the 18th to schedule another dose adjustment because it was possible the 3rd one on Friday the 15th would work if the one on Monday the 11th didn't.

    On Friday the 15th there was a terrible snowstorm, and my husband and I set out 2 hours early to get there in time for the appointment for my dose adjustment, but a truck overturned on the freeway and the road was backed up for miles. We had to turn back, and when I called to cancel and reschedule my appointment they said her next opening would not be until December 27. When I called the facility closer to us, they said they still had not received her referral and at this point they wouldn't be able to fit me in until the end of January regardless.

    So I am so sorry this is so long with so many boring details. I'm telling all of them to you because this is my question: I am wondering if I can trust this PA?

    I believed her when she said there couldn't be a problem with my pump because otherwise I'd be in Baclofen withdrawal, and I believed her when she said I would just need to keep coming back until I reached a "therapeutic dose."

    But now I am questioning if any of that was true?

    Please tell me if you think it's possible my pump wasn't installed properly in the first place and that's why the 50 to 80 to 120 micrograms hasn't worked.

    And please tell me any information you have about what she's said about a "therapeutic dose." Is it normal to not have any relief on 50 micrograms through the pump when you had almost complete relief at trial?

    And is she right about not being able to increase the dose to a ballpark "therapeutic level" because I might "fall into a coma"?

    And I want very much to know how you all found your "therapeutic dose" -- what was it? and how long did it take after surgery?

    And OMG, as my daughter would say, after all that, what can I do to make her give me a referral so that we can get care for my pump at a facility closer to us as we were promised?

    I am finally reaching a point where I am accepting that my pain is going to be just as excruciating and just as disabling over the holidays, and that I won't be able to decorate the tree with my daughter after all.

    And rdmc wrote back to one of my posts with recommendations for Zanaflex and a benzodiazapene to help with the pain from spasticity, so I am thinking that might help while we wait until Dec. 27 to go back to this PA for the 3rd dose adjustment. (If you have any other ideas about stopgap measures to help make the pain bearable in the meantime, please let me know, and I will ask my PCP about them when I see him this Wed. Dec 20).

    But I have a pump in my body -- my own silver hockey puck -- and I want to believe in it and take good care of it, and I don't trust my what my PA has been telling me because she was wrong about the referral and wrong about having openings before the holidays . . . Those are just basic things, and I could find out that she was wrong and try to fix it (though so far without luck).

    But if there is a possibility that she has been wrong about my pump -- I need help so that I can find a way to take action.

    And if she has been right about my pump (and just wrong about practical things like referrals and appointment times) -- I still need help from those of you who have been there and know your own bodies and your own pumps so that I can be educated and have an idea of what to expect and keep hope alive for me and my silver hockey puck.

    Please let me know what you think when you can. Maggie

    #2
    I actually asked my PA if that was a possibility when I saw her for my second dose adjustment last Monday Dec. 11, and right away she said that couldn't be the problem because if that were the case I'd be in withdrawal from Baclofen.

    - How could you have withdrawal if you aren't getting any baclofen?
    - Did you have withdrawal after your trial dose? Of course not, you haven't built up any dependency to it.


    Then she said that the reason the pump wasn't working yet was that I wasn't yet at a "therapeutic dose."

    - You responded to 50 mcg during the trial so your maintenance, or therapeutic, dose should be pretty close to that (then factored over a 24 hour period). If she gave you a 50 mcg bolus your result should closely mimic the trial.

    - She could turn on flex dosing and hit you with a small bolus every few hours. For example, I get a bolus every evening around bed time to prevent nighttime spasms.

    Fall into a coma?
    - You went from 0 mcg to a 50 mcg injection. Did they monitor you to ensure you would not go into a coma?

    - I went from 50 mcg to 340 mcg in 2 days.

    We could be referred to a facility 45 minutes away from us for dose adjustments and refills, and he'd told us we definitely could as soon as we came in for our post-op follow-up.

    - Have you called to make an appointment?
    - The PA could be 100% correct, but you need someone closer.
    - If you do need a referral, have your PCP do it. It's better to have two referrals than zero.
    - At minimum, the PA seems obtuse and difficult to work with. It really seems like she's in the wrong position...

    Comment


      #3
      just back from the ER . . .

      Marco, thank you so much for your two replies (to this thread and to my other one).

      You just verified for me what I suspected -- what my PA has been telling me (about all of it) is not adding up.

      I called her office today to try to get in earlier for a dose adjustment and to ask what she could recommend to my PCP to prescribe for me orally to hold me over until I was on a "therapeutic dose," but reception said there were no earlier appointments, and that they couldn't guarantee she would have time to call me back.

      By late afternoon my spasticity was so bad I was crunched up in pain and crying into my fist (it gets worse throughout the day and into the night, like yours), and my husband took me to the ER.

      The ER doctor gave me 5 mg of Valium -- and that helped a little and is continuing to 2 hours later. He was very nice and said he didn't know anything about Baclofen pumps and asked who he could call so he'd know what else was safe to prescribe for me that would help. I had the office number memorized.

      He reached my PA after 2 hours and when he came back, he said that she had said she didn't feel comfortable with him prescribing anything, and that the Valium should tide me over tonight, and that she would call me back tomorrow.

      Oh, wow.

      Marco, you asked if I'd made an appointment at the facility closer to us. I tried to, but they said they could not take me without a referral from her. When I called to ask for a referral from her (after she said I did not need one), she did not give one to me and she still hasn't.

      Wow again.

      I am just relieved right now that the 5 mg of Valium made it so I wasn't balled up and crying and sweating and just racked by spasms. I hope it lasts through the night.

      I could tell that the ER doctor was a sympathetic person. He said, "if it gets bad like this again, please come back and I'll do everything I can to help."

      So that is something.

      I am going to try to take advantage of the 5 mg Valium to get some sleep -- I haven't been able to sleep through the night in over a week because the spasticity wakes me up.

      Thank you so much for being there . Maggie PS. I am a fan of the word "obtuse." I am trying to think of an explanation for what she's doing other than that, and I can't come up with one!

      Comment


        #4
        Thank you for the update. I'm sorry that your struggles continue, but believe you're on the right course for spasticity and pain relief.

        Have you considered trying the doctor the PA works under?

        Taking oral medications may interfere with the correct dosing. That's also why the PA should try to work you in and not delay your next adjustment.

        Until then, try to control your stress level because you get into a vicious cycle (more stress, more spasticity, more pain, repeat).

        Medtronic won't intervene between a providers and your care, but maybe there's a provider closer without the referral requirement.

        There is also an Ambassador program where you can talk to a patient and share your story. Ambassadors cannot give medical advice, but they can offer you a listening ear and share from their experience.

        Here's a link where you can request an Ambassador call:

        http://www.tamethepain.com/chronic-p...gram/index.htm

        Again, I am sorry you are in your situation. I know how bad the pain can be and glad the Valium is providing some relief. I hope they gave you enough to get you to your next adjustment.

        Comment


          #5
          Checking in on you.

          Comment


            #6
            Hi Maggie

            I am sorry to hear all of the issues you are having with your baclofen pump. Marco has given you some good info.

            I can share some of my experiences. When I got my first pump, in 1999, my dose was set at 50 micagrams. After 2 weeks, I realized my legs were weak. I went in a few days later, and my pump dr, set my dose at 25 micagrams. That took care of the weakness. Then we a started about a 3 month journey to a manageable dose for me. I have been told the baclofen dose should only be increased 10 % at a time. We went from 25 to 27.5.
            I went in every 3 weeks until we hit a dose that worked for me.

            Fast forward to now....my current dosing is 117 micagrams from 7am- 11pm and 119 micagrams from 11 pm - 7 am. Like Marco, this dosing is so my spasms stay in check while I am sleeping.
            I even take a 20 mg oral Baclofen to help my spasms. I work from 3pm-11:30 pm.

            I still have a little spasticity. I use it to let me know when I am overdoing things. I have taken all of the spasticity out but didn't feel comfortable.

            I like Marco's suggestion to talk with the lead dr in regards to your pump management. I would also ask to be given info to talk to your Medtronic rep, who is handling your case. In my experience, they have proven to be a good resource.

            I wish you the best Maggie and please keep asking questions.

            Take Care, Bob

            Comment


              #7
              got my pump care transferred and trying to stay optimisic

              Hi all,

              Bob, thank you for sharing your experiences -- that helps so much -- and Marco, thank you for checking in on me!

              The day after I last posted my husband ended up taking me to the ER at the hospital where we wanted my pump care to be transferred to in the first place (it's an hour away from us vs. 3 and a half hours). I'd started throwing up from the pain, and I couldn't stop, and we didn't know what else to do to get me help.

              So we used my wheelchair to get me from the house to the car and from the car to the ER, and I lay in the backseat dry heaving and racked by spasms the whole way there -- and then when we were checking in I passed out.

              My poor husband was just frantic and obviously I was absolutely wrecked. But, thankfully, the doctors there took the situation seriously -- they gave me Zofran for nausea and Dilaudid for the pain, and once I was stabilized they called in one of the doctors there who specializes in Baclofen pumps to consult with us, and he arranged to have my care transferred there with my first appointment in 2 days (no referral from the untrustworthy PA necessary!).

              I've had 3 dose adjustments since then and am now up to 300 mcg. I can sleep through the night, keep food down, and stand and walk on my own (from the car into the hospital to the waiting room to the doctor's office and back)!

              I'm trying to stay optimistic. I'm not in crisis any more and I have care for my pump -- and I trust my new doctor.

              Thank you for being here and supporting me -- I'm hoping that it will only get better from here!

              Comment


                #8
                Originally posted by Maggie2015 View Post

                I've had 3 dose adjustments since then and am now up to 300 mcg. I can sleep through the night, keep food down, and stand and walk on my own (from the car into the hospital to the waiting room to the doctor's office and back)!

                I'm trying to stay optimistic. I'm not in crisis any more and I have care for my pump -- and I trust my new doctor.
                So glad that you made progress even though the price was so high. I would not be surprised if you still had a few more dose changes before it really gets really dialed in. You just weren't getting enough medication to provide you ample relief. I like having no extra muscle tone, but the majority of people seem to like a little tone.

                At least you now know your pump is working and you're moving in the right direction.

                Happy New Year to you and yours.

                Comment

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