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Pain pump dosage increase time

Hi All,

I just had a pain pump implant last week Tuesday for my chronic thoracic pain. I have a Flowonix pump placed in the right side of my back and the catheter placed at my T11.

The medication used is morphine. They started me out at .5mg which I honestly didn't even realize it was on. I had my one week appointment this Wednesday and the doc increased it to .75mg and said I will see you on the 15th.

So far the increase has done nothing for pain relief. When I did the trial they implanted the catheter and I wore a pack around my waist that had the medicine bag in it. This was done on a Tuesday and I went in every day to get the dosage increased. By that Friday they pulled the catheter and I was done.

I received just about 100% relief during the trial. I believe we ended up at about 1.75mg by the end. However, now that I have the permanent pump in my dosage is increased once a week.

I just wanted to see if there are others out there with a pain pump to ask if they recall how often their pump was increased during the beginning?

I'm not a patient person so the fact that this is going to seem to take forever to get where I was at with the trial is bugging me. I should have asked about this when I was in the office but that's another one of my downsides is I start thinking of a question after I leave the doc.

I think I'm going to call them tomorrow and see if I can come in sooner to get this increased again. I have something in me that worked wonderfully during the trial and don't want to waste any more time than needed to get to that relief point.

Any thoughts are welcomed. Thanks for reading.

Jason

Taking it one day at a time, that is all we really can do while living with chronic pain.

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1345

Comments

  • memerainboltmemerainbolt IndianaPosts: 3,432

    Jason

    I might have missed it, but what meds are in your pump?
    Before your next doctor's appointment, start keeping a notebook of questions and concerns to discuss with him. Also of your spikes in pain, pain levels, when and why.
    I would take my notebook and let my PM doctor read what was going on. He always said that by me doing that it helped him understand better what was going on.
    Ask your doctor what is his procedure for increasing the dose.

    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my Medical History
  • jbowerjbower wisconsin Posts: 31

    Hello Sandra,

    My pump is filled with morphine like yours. I like your idea about keeping track of pain spikes and questions. It made me remember my pain journal. When I pulled it out April was my last entry so I am way behind.

    I spent time today updating my journal along with writing down some questions I have for the doctor. I did call them today but they can not get me in sooner then the 15th. They did have an appointment open for the 13th but after they spoke with the doc he wanted to save that for another patient.

    So it looks like I will be waiting till Wednesday for another increase. I will be asking what my final dosage was for the trial since I don't know for sure.

    I just really hate waiting.

    Taking it one day at a time, that is all we really can do while living with chronic pain.

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  • memerainboltmemerainbolt IndianaPosts: 3,432

    I'm sorry I am the only one answering you but at this time no one else has a pump.
    That's also why I told you earlier when you get an increase you should be give paperwork showing everything regarding your pump.
    I went back and looked and at first I was getting a 20% increase every 2 weeks. In May, it started with once a month 10-15%. In August it would be every 3 months, my usual appointments. But that's about when it all went downhill and he was back to every couple of weeks but only 3-5%.
    You should get increases every couple of weeks at first to try to get you to that sweet spot.

    I am so glad you brought your journal back out. It's one thing to go in and say "I hurt" but it's another thing to go in and say this is when and why "I hurt".
    Patience!!

    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my Medical History
  • jbowerjbower wisconsin Posts: 31

    No one else has a pump? That is really disappointing to hear as there really isn't much out there to look up online. Just the basics of what the pump is and how it works.

    So far I have received 2 sheets. The first one showing it was set at 0.5mg which I didn't find till after my follow up appointment. It was in the box of the device to give extra bolus shots. Then the day of my one week follow up I got another sheet showing he increased it from 0.5mg to 0.75mg. It also show's how much was in the reservoir remaining and when my next fill up date is.

    That is very discouraging seeing how far apart your doctor was increasing the dosages. I hope it doesn't go that far out for me. I hit max out of pocket prior to this surgery so the more I can get in before the end of the year the better.

    I'm going to have to start being more pushy and speaking my word in order to get this done. I have gone out walking the past few days and my pain levels hit a 9 to 10 by the time I'm done. That's only in 45 minutes.

    My comment about asking where my levels ended was with the trial. I didn't get any paperwork with that so I want to find out at my next appointment where that number was at when I was receiving pain relief then compare that to this pump. I will keep making my notes for him to see on the 15th.

    Hopefully I can get him to see me more often than not to get to a spot of relief. Are you receiving any relief from your pump? I know at one point you mentioned you had yours in January and still have not found the level of relief you are looking for. That just seems like a really long time to get anywhere with the pump. I wouldn't be able to handle going that long. Are you still having to take oral medication as well? I would rather cut those out as for me that was the reason to get off of oral medication was to have this pump implant.

    Taking it one day at a time, that is all we really can do while living with chronic pain.

  • memerainboltmemerainbolt IndianaPosts: 3,432

    At one time, several months ago, there were 4 people on here with pumps but they quit corresponding. There is one other person but she doesn't post very often. So it's just us. A pain pump is hard to get, it's the last resort after everything else has been tried.

    As far as the trial, the same thing happened to me. They put a large dose in just to see if it would work and it did. Before I left the hospital I was pain free. But 2 hrs. later it was back, so we knew it worked. If you keep getting large increases and something happens later, they will be not be able to keep increasing it.

    I'm different and not to say I'm in more pain than you but my back is trashed. Spinal stenosis, DDD, scoliosis at 3 levels, 4 ruptured disc, 2 fractured vertebra, sciatica, 4 bone diseases, severe nerve damage and I cannot be fixed. My catheter for my pump is at T1, was supposed to be at T10. I had been telling my PM for months that I was in so much pain, nothing was helping. He has tried everything. We only found out about the cath last week and he is agreeing with me, that's why I'm in pain. The cath is too high.
    I too was hoping to get off the oral meds and I have except one and for breakthrough. But I don't have breakthrough pain, mine is constant. It feels like someone hit me across my lower back with a baseball bat.

    My doctor told me I was the worst case he has ever had. It amazes him that I can even walk. Honestly, it does me too.
    I usually don't open up about my pain on the forum, just on my discussion. I feel there are others that would rather have my attention than hear me whine. So i hope you don't mind. The only time I leave the house is to go the doctor. I can't stand or walk more 10-15 min. So I can't go anywhere. We will find the right dose and hopefully get the cath moved. We'll know Wed.
    Your doctor might do things different than mine. Keep adding questions to your notebook, go prepared.

    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my Medical History
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  • jbowerjbower wisconsin Posts: 31

    I am sorry to hear that Sandra, you really are in a worse position than I am. How did they end up messing up where the catheter was placed? That seems like a big error on their part.

    Mine was to be placed at the T11 but I found it odd that the entry point was on my lower spine. So somehow he put it in my lower back and pushed it all the way up to T11. I would have thought for sure he would have put the entry point up in my thoracic as that's where they put trial catheter. I hope the same thing doesn't happen to me as it did you. How did they find out it was placed to low?

    Hopefully you get something fixed sooner than later as that's no way to live. I'm still able to go about my day but it causes a lot of constant pain. Especially standing for more then 10 minutes. When I rest and ice it simmers down but with 3 kids at home that's not easy to do.

    I wish you luck on Wednesday. That's the same day I go in for my follow up and staple removal. Our daughter also goes in that day for x-rays on her fractured foot to see how it's been healing and how much longer she has to wear the boot. Busy day for all of us.

    I'll let you know what comes of it since you reminded me of my pain journal :)

    Taking it one day at a time, that is all we really can do while living with chronic pain.

  • memerainboltmemerainbolt IndianaPosts: 3,432

    A few weeks ago i had facet joint injections, under X-ray of course. While my PM doctor was doing this he stopped and said "where's the catheter?". I said what do you mean? He said it's not at T10, didn't the neurosurgeon say it was at T10? That's what I was told, I have it written down. So he sent me down for a full back X-ray, sure enough, it was at T1.
    Wednesday I am not planning on leaving his office without an answer as to what we are going to do, including stronger pain meds.

    Good luck Wed., please let me know how it went. Ask questions!!!!

    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my Medical History
  • jbowerjbower wisconsin Posts: 31

    That is crazy Sandra. I wonder how in the world they messed that one up. I hope you were able to get some answers today.

    My appointment went great today. The docs PA that I see for the appointments called in sick today so I got to see his other PA today. It was amazing. I started off with the journal and she read through what was causing my spikes in pain this past week. Then she took the time to answer all of my questions I had written down.

    From there we talked about the device to give yourself extra bolus shots and she was surprised he didn't set that up on my last appointment. She she got that all set up to give me an extra dose every 2 hours for a max of 1mg. She also increased my dosage of the morphine from 0.75mg to 1.00mg.

    She also said after reading my chart she wondered if he mentioned anything about adding this one med, I forget the name but she described it like lidocaine as it numbs the nevers. She really thinks I would get maximum relief by adding this to my pump.

    I asked her what's next say if this increase doesn't do anything and she said she recommends using that numbing medication and Dilaudid instead of continuing increasing the morphine dosage. So she said to get in within the next week or two and she will order those just in case. That way if I come in and tell her it didn't do much she can then drain the pump and refill it with the new meds. So I go in again on the 28th.

    I walked out of there pretty happy because she explained a lot and took the time to go through it where it made sense. Plus took the time to answer all of my questions. Plus I get to see her again on the 28th because the other guy was booked till January. Where was she this entire time :)

    I am starting to tell that the pump is doing something now though. I'm getting some relief as we speak but it's too early to tell. I was on my feet more tonight and was hurting pretty quick so I'll wait and see what happens. I'm happy I'm finally feeling something though. Also my catheter is placed at T11.

    I went back to work this week and it's taking a toll on me. I am ok till after lunch when the surgical pain starts hurting and by the time I leave I am just drained. I might have pushed going back a little too soon.

    I hope that you had some good luck today as well. I'm interested in hearing what he said about the placement so let me know.

    Talk to you later,

    Jason.

    Taking it one day at a time, that is all we really can do while living with chronic pain.

  • memerainboltmemerainbolt IndianaPosts: 3,432

    Jason

    Sorry it's been a while, I've been pretty ill.
    But it was so good to read about your doctor visit and everything went so positive for you. I am so glad for you.
    The numbing medicine your doctor mentioned, was it bupivacaine? That's what my doctor wants in mine but we have to have the cath moved first.
    Since it's been a week, how are you feeling now? You have to learn your limits and don't go over it, only you will pay for it.

    I had a caudal block yesterday, nothing so far. The neurosurgeon call my PM doctor and he wants a new MRI from the neck down and he wants to see me. He could not believe I was going through this. The MRI will be this Fri. and still waiting on his appointment.

    You and your family have a wonderful Thanksgiving!!

    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my Medical History
  • jbowerjbower wisconsin Posts: 31

    Hi Sandra,

    I'm sorry to hear that you haven't been feeling well. I hope you are better for Thanksgiving tomorrow. Our 3 year old son brought home a sickness about two weeks ago and he was so kind to share it with all of us. Our daughter was the only one who hasn't been sick till today. My wife and I have had this for about a week now and doesn't seem to want to leave.

    The bupivacain sounds about right but not 100% sure. They name these meds with crazy names. I'm pretty sure that's what will happen on the 28th though. That she will drain the pump and then put in the numbing medication and Dilaudid. The morphine isn't giving me the relief I am looking for. I'm hopeful from the way she made it sound that I will get more relief from that.

    The programmer was working good but I don't think it's working now. I can't feel it anymore. The first couple of days every time I would use it the date of my next refill would change. Then it started going back up and then down and up. Now it's stayed the same the past few days. So something must be wrong with it.

    I'm sorry the block isn't working. Did you find out how they messed up where the catheter was placed?

    Have a Happy Thanksgiving as well.

    Taking it one day at a time, that is all we really can do while living with chronic pain.

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