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
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
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